What were your evaluations like? 3 hours
Where did they take place? Autism evaluation clinic
How many evals before the diagnosis? 1
Did any professional ever tell you it wasn't autism? no
[QUOTE=melomo83]What were your evaluations like? 1.5 hours with a Ped Neurologist at Boston Childrens. He asked us lots of questions, observed DS.
Where did they take place? Boston Childrens Hospital
How many evals before the diagnosis? EI eval's, but does not DX, then just the one at BCH
Did any professional ever tell you it wasn't autism? Before the Neuro spoke the words ASD, PDD-NOS, it had NEVER been mentioned. EI told me that I should make the appt to rule anything out b4 3rd B-day. We had no clue. My DS was NOT represented by shows on ASD, or on Oprah
Thanks for your input!!!! What were your evaluations like? -LONG!! Hours and hours...when he was little they would break them into 2 hour sessions over 4 weeks...so I guess 8 hours total. About 2 hrs of them asking me every question possible...probably 4-5 hours of them spending time with Mason and then the last bit of time was going over results and recommendations. Where did they take place? -At the office--except EI did come to the house and do his one for school. (that one only lasted a couple of hours.) How many evals before the diagnosis? -We had many...I want to say at least 10 over the last 3 years...we were orignially referred by our neuro who said "I think he has autism." We went to the first evaluation and from there just kept being referred to more doctors!! It just kept going and going! Did any professional ever tell you it wasn't autism? -Yes...all of them except the last. That's why we kept getting referred to more doctors...In Mason's case he has a brain injury, resulting in scarring in his temporal lobe...I kept hearing "well he has autistic traits...but with the brain damage I don't feel comfortable diagnosing him with autism at this time...please go see dr. so and so for further evaluation." Finally this last doctor said it's time to treat symptoms and not worry about the other things that are there, so he dx'd him with autism and recommended ABA. ECI~8 mos. no mention of autism till they were in process releasing her to the school system at almost 3 years old. pediatrician-autism diagnoses within 10 min. of looking at here and listening to my concerns. Ped. neurologist~pdd after 20 minutes of being with her Dev. pediatrician~autism~3 hours of evaluating her! school team at home(first time)~2 days over 5 hours long~pdd diagoses school team 2 years later~2 days evaluation~provisional autism with savant abilties. Making apt. with same dev. pediatricianl soon who seems to be the only expert! What were your evaluations like? multi-disciplinary approach Where did they take place? at ped neuropsych's office How many evals before the diagnosis? he went there about 6X for about 1-2 hours each time Did any professional ever tell you it wasn't autism? his pediatrician ignorned my concerns and finally agreed to a speech eval around his 3rd birthday. After that, no problems with professionals who KNOW autism. His ped neuropsych said dx of pdd-nos but that he's not exactly on the spectrum. Thanks for your input!!!! What were your evaluations like? Checklist done by family doctor and myself (M-CHAT twice), then referred to neuropsych. 25 minutes later (after reviewing results of those, plus my notes and parent interview), dx of autistic disorder. He was also evaluated by an intake nurse for EI, and a multidisciplinary team comprised of speech pathologist, occupational and physical therapists, an audiologist, a psychologist, and a developmental pediatrician. They confirmed the dx of autism. Where did they take place? In doctors office, neuropsych's office, and school district offices. He's also been seen by a psychiatrist and we've been referred to yet another therapist who specializes in autism, and we saw him in his office, and we will see the other therapist in hers. He's also going to be seen at our Children's Hospital. How many evals before the diagnosis? Two screenings (myself and family doc), and then one evaluation by neuropsych, where dx was given. He's also going to have some IQ testing done in the near future. Did any professional ever tell you it wasn't autism? No. He has been described as a "young boy with evident autism", so I guess it's pretty apparent. What were your evaluations like? Medical diagnosis - first saw the pediatrician, who did initial MChat eval. and looked over the developmental charts, etc. I'd prepared. Then pediatric neurologist and developmental ped. who did several evaluative tests, as well as an MRI, EEGs and bloodwork. All confirmed my suspicions. School evaluations: Did their own testing, as well as reviewed evaluations from EI, independent OT, ST, and doctor's reports. Gave educational diagnosis of same. Where did they take place? In office, hospital and school How many evals before the diagnosis? Initial medical diagnosis was immediate. Other tests simply confirmed. Educational diagnosis encompassed several days of testing. Did any professional ever tell you it wasn't autism? No. What were your evaluations like? Where did they take place? How many evals before the diagnosis? Did any professional ever tell you it wasn't autism? Thanks for your input!!!! EI in our case NEVER NEVER said ASD, or Autism ... never addressed sensory issues ... I mean not just that they said it was NOT Autism, the word was NEVER SAID. Jsut developmental delays. School finally diagnosed her at 6, when she was not socializing or following school directions. What were your evaluations like? over several days by multi-disciplinary team with several evaluation tools. Where did they take place? at school How many evals before the diagnosis? one - though it's an educational diagnosis Did any professional ever tell you it wasn't autism? no What were your evaluations like? SEVERAL IN SMALL INCREMEMNTS, NUER., DEVEL. PED., PED, PSYCH, ENT., ETC Where did they take place? HOME AND OFFICES How many evals before the diagnosis? LOTS! But they all 'knew' right away. Did any professional ever tell you it wasn't autism? never! What were your evaluations like? We have had several, a dev pedi in DC, a neuro, a child psych, and another dev pedi when we moved to Florida. This is not even counting all the evals the school did. Where did they take place? In the providers office. How many evals before the diagnosis?The first dev pedi, the neuro and the second dev pedi spent about 3 hours with us. The first two spent most of the time doing different kinds of tests and observations on the boys. They were mainly with the boys, they would ask me questions too, but their attention barely ever left the children. The child psych spent about 5 minutes with them and then they went to a seperate room and he asked me a bunch of questions and decided immediately they were autistic. The last dev pedi based his opinion on the evaluations the school did and their opinion. Although we were in the same room he didn't spend a whole lot of time engaged with them or trying to engage them. Actually they were trying to engage him, but he kind of ingored them. It was a little odd. Did any professional ever tell you it wasn't autism? Yes. THe first dev pedi every time we saw her (they saw that one every few months until we moved) assured me it wasn't autism but we would find out what it was, the boys were too engaged with the world around them she thought and the neurologist. They last saw them right after their 3rd birthday. Thank you, gtto, for sharing your story. I told my son he has autism a couple months ago (at age almost 9). I'm glad I did, especially after reading what you wrote. It never occurred to me that he might eventually think he was "going crazy" or try to live up to what he believed was expected of him. To answer the original topic questions: My son was evaluated at age 5 by a speech therapist, who didn't react to all the red flags we told him about (we didn't suspect autism, because we didn't realize it was a spectrum disorder. We only knew he didn't fit the severe stereotype). He was evaluated at age almost 6 by the school district (equivalent here in Norway). They did language and cognitive testing and some observing, then referred to the regional experts who did more testing and observing at age almost 7. Both the school district and regional experts did testing in multiple sessions. The evaluation process also included vision test, hearing test, physical therapist evaluation, EEG, MRI, genetic testing and metabolic testing. It's important to get some biomedical testing as part of the evaluation process, at the very minimum lead testing and a proper hearing test. Read the official American guidelines for neurologists here: http://www.autism-pdd.net/forum/forum_posts.asp?TID=18139&am p;KW=neurologist My son was evaluated by EI,OT, PT. Most of his early problems were blamed on his premature birth and his Mothers drug and Alcohol use in her pregnancy. At around 2.5 the EI worker said she thought he had Autism,She sent a letter to his Pede,and we took a Video of his stimming and Behaviour ,then dropped it off a few days before his Appointment. His pede Dx'd him then at 2.8 With AS,then testing with a psychiatrist who agreed but added SAD,then to the dev pede who dx'd him with PDD,Aspergers type Linda What were your evaluations like? Where did they take place? How many evals before the diagnosis? Did any professional ever tell you it wasn't autism? Age 2: Evaluation by Speech and Language Clinic at Northwestern University. Conclusion: needs speech and OT. Might be somewhere on the autism spectrum. Two days with a 4 hour session on each day. Took place at clinic. Age 2 1/2: Evaluation by pediatric neurologist. Conclusion: probably somehwhere on the autism spectrum. Clearly has some traits but difficult to dx for sure for a child his age at his level of functioning. One 2 hour session, plus bloodwork and EEG sleep study. Took place at hospital. Age 3: Evaluation by private clinic where C had been receiving speech and OT. Conclusion: probably somewhere on the spectrum, needs speech, OT and lots of sensory integration therapy. Not sure the duration, they evaluated over the course of therapy. Took place at clinic. They also came to our home to observe C. Age 3: School district evaluation. Conclusion: Disability category "developmental delay." Two days with 6 hours on 1st day and 3 hours on 2nd day. Took place at school offices. Age 6: School district evaluation. Conclusion: Disability category changed to autism. Not sure how many hours they spent on the evaluation. They baked it into the school day over the course of 2 months prior to his 6th birthday. Took place at school. Age 6 1/2: Private neuropsych evaluation. Conclusion: PDD-NOS Three, 2 hour sessions with C, plus I provided video of him in his home environment. Took place at doctor's office. No one ever told us it wasn't autism, though no one was ready to come out and say it for sure either. C's symptoms have always been inconsistent. I read the DSM-IV and self-diagnosed C as PDD-NOS when he was 2 so we've always operated under that assumption. This year was when we got the formal dx of PDD-NOS. Even though I knew it was autism, and everyone suspected it, I was hesitant to push for a formal dx because I didn't want my insurance company to know. They still don't know. And they are still ponying it up for private speech and OT. What were your evaluations like? 4.5 hrs. Where did they take place? My Home How many evals before the diagnosis? 1 Did any professional ever tell you it wasn't autism? Ped never even recognzed a delay. The EI team recognized his issues immediately as he was a stimming bundle of nerves when they came. They were comfortable with giving a educational DX as they knew that I knew what the DX would more than likely be. I provided detailed information to them via fax prior to their visit. Keep in mind, we only have an educational DX. We are on a waiting list for a ped neurologist in order to follow up with a medical DX and then he will qualify for wrap around services. (ABA, etc.) In my travels, even prior to DX it was people in the educational system who noted his issues and would ask questions. I have yet to come accross anyone from SpecialEd who didn't immediately observe him for a few moments and recognize his issues. And these were just people in passing. Not formally assessing. But I suppose it is difficult not to assess even after hours. Perhaps the team did not want to provide and educational DX fro teh child you are conerned about. But, they may have also indicated that he qualified for therapies. What were your evaluations like? Jason's had 2 evals. The first one was multiple parent interviews and questionaires and then 45 minutes of observation done by a child psychologist. The secone eval was at Columbus Children's autism center and it was multi-disciplinary (child psych, dev ped, ST, OT, ect) over many days). We've had a third more informal... or partial eval done by the original child pscyh who diagnosed him who is now saying subclinical Aspergers. Where did they take place? Both evals took place in their offices... not in our home How many evals before the diagnosis? First eval he was diagnosed with PDD-NOS and the second he wasn't diagnosed or was undiagnosed if you will (they said NO ASD). Did any professional ever tell you it wasn't autism? We've had many professionals say it wasn't autism and that he was just "gifted" but watching him fall apart in a room full of other 4 year olds and I know there's something more Is it just me, or is anyone else noticing a pattern from the posts here?...many pediatricians are just totally missing it, or choosing to dismiss it when parents express concerns about their child's behaviors, delays, etc? Um, shouldn't the doctor be the one suggesting it to the parent, not the other way around? I started expressing concerns early on, and kept getting the "oh, much of that can be attributed to the fact that he was premature, give him time to catch up." Okay, I could give them a pass on some of the developmental issues, but not the stimming, the odd behaviors, the fixations, the meltdowns over seemingly innocuous things, etc... I just wish I had known more then and would have been more assertive about insisting that it be investigated further, requesting more information...I didn't even know there was such a thing as a developmental pediatrician until I started working with ECI... I think many pediatricians are doing their patients a grave injustice, given that early intervention is so vital to the long-term outcome... BTW, gtto...thanks for sharing your story...
About 2 weeks later they scheduled an appointment with us and explained their diagnosis, why and how he is autistic and answered questions. I've heard though of many others that have struggled for years and many evaluations before they finally get the diagnosis. P.S. I loved gtto's input from the source. I had someone tell me that they would never tell their child they were ADHD, ADD or ASD, because it would be a crutch. I replied that I would want my child to understand him/herself instead of feel crazy so that they can learn about who they are and what makes them great! Gtto reinforces my thoughts. What were your evaluations like? LOTS and LONG, but a lot took place at the daycare. An OT, Psych, and ST, spent 2 weeks "watching" him then over 4 months working with him as an evaluation! Where did they take place? Daycare and Naval Hospital How many evals before the diagnosis? Lots, but everyone knew he was autistic from the start Did any professional ever tell you it wasn't autism? Never do or did anyone question it or disagree with it! There are absolutely way too many pediatricians out there who don't use proper developmental screening tools and don't know what autism looks like in its various shapes and forms. The CDC has a campaign called "Learn the Signs. Act Early" which is directed at parents, health care workers and child care workers. Their website has some downloads, things people can print out to raise awareness. Some are specifically designed for doctors, others for daycare centers, etc.. You can find them at:
Sharlet did a PEP-R and the CARS.
Also hours of additional parent interviews and questionnaires.
I was told the first day that 99% she was autistic but that they didn't know where on the spectrum.
After two months we were given Moderate-Severe classic autism dx.
The first time, I was referred to a neurologist and a neuropsychologist for periodic shutdowns. We didn't know they were shutdowns, or what shutdowns were. The neurologist did an EEG and said that it was abnormal but not epileptiform, but that I might be having seizures too deep in the brain to show up on an EEG. The neuropsychologist didn't believe in labels but wrote a long report detailing my lack of friends, lack of much emotional responsiveness, periodic inability to move/comprehend/speak, etc., and ended up saying I had schizoid features (schizoid personality disorder means lacking social desire and emotional response, and while this is not actually true of me, it was true of much of my outward appearance -- in children schizoid almost always means autism). These were both at the age of 13.
At age 14 I was evaluated again after a suicide attempt (I was extremely burned out from school being accelerated due to shutdown being misperceived as boredom -- I'd gone from seventh grade to college in two years and finally couldn't take it, I'd also gotten mixed up with some questionable people and activities, who later ended up listed in my medical records as people I should not have contact with because they encouraged me to act "crazy" for their entertainment, and gave me drugs). I got a label of bipolar, which turned out to be the only diagnosis that doctor gave out to anyone. I also got again, the "schizoid features" and the detailed noting of the social stuff. My parents checked me out of that place against medical advice so they never completed the testing. They had been giving me a number of tests at that point.
About a week later, I was still suicidal, and a then-friend called the police because I had been talking on the phone to him about death. I was put back in a place but it was a different place this time. The psychiatrist spoke to my mother and got a detailed history. My mother had a tendency to try to make me sound more normal than I was, but nonetheless he told my mother that from the history she gave I sounded like an "idiot savant" and autistic (there was no reason for him to look for autism in particular, this was a generic mental institution that took people with both psych and developmental labels). He observed me for a long time in the mental institution. He ran a lot of tests. On some of them, which measured lower-level processing, I scored higher than most adults. (A common thing for autistic people.) He also tried to talk to me about things. (My communication at the time was a mix of real things and things I'd made up for a number of reasons -- I tried to "act crazy" to cover for the fact that I didn't really know what was going on. I didn't know what autism was at this point.) And he ended up concluding I was probably autistic.
Although he'd informally diagnosed me as autistic almost immediately, the conclusion took a month and two separate admissions. In the meantime he gave a long description of what I was like, and diagnosed me with central nervous system disorder not otherwise specified, psychotic disorder not otherwise specified, and dissociative disorder not otherwise specified. (The latter two were because nobody could tell if I actually believed the fantasy world I was acting like I lived in, or not. I didn't, but they didn't know this. Also shutdown and overload were attributed to "dissociative episodes" at the time and psychologized.)
At the end of all that observation and evaluation he added PDD-NOS to the list of diagnoses. Orally he told my mother that I was autistic. He also said he always used "not otherwise specified" diagnoses because they seemed less hopeless to the insurance, and he was afraid they would either refuse to cover me, or else consign me to permanent institutionalization, neither of which he wanted. At the time this was considered normal.
So my diagnosis continued for the rest of that year to be some combination of PDD-NOS, CNS disorder NOS, psychosis NOS, and dissociation NOS. Sometimes also developmental disorder NOS. They also considered that the drugs I'd taken might have permanently affected my brain, but then discarded that when they found out from my mother that I'd always had unusual perceptual experiences. All the reports from this time period list either PDD-NOS, developmental disorder NOS, CNS disorder NOS, or extremely detailed descriptions of my social, communication, etc. differences. I also found a paper describing me as low-functioning but not giving any reasons for this description.
Then the next year (after spending most of that year in and out of the same mental institution) I was transferred to a teaching hospital where they decided I was either dissociating or making things up. (I was making things up, but not in the manner they meant. I was trying to give them what I thought they wanted to hear, among other things, because at this point I was terrified of them.)
From there, I was transferred to a residential treatment facility. They did a long interview of my parents which included mentioning the autism diagnoses. They told my parents that from my reactions to drugs, and from my parents' history, they did not think I was schizophrenic. Then immediately after I got there, they changed my label to paranoid schizophrenia, because of the "delusion" that I was not human and because of the "hallucinations" I was using to mask the fact that I still didn't know why I did things like overload and shutdown (I thought I had to have an "explanation" beyond just overload, I didn't understand why these things happened so I'd just use what I'd heard like "the voices said to do this" or whatever -- I know this complicated things but I was a confused and by this point overmedicated kid). The "evaluation" for this consisted of the psychiatrist sitting and listing off the DSM criteria to me. This too turned out to have some insurance reasons for it, they wanted to put me on a highly dangerous drug that only was allowed for schizophrenia at the time and nothing else. (They put me on twice the toxic level of it as it turns out.) Suddenly all my autistic traits (such as rocking, unusual posture, overload, flapping, etc) became "psychotic" traits overnight and they tried (sometimes using very brutal behavior-mod methods) to train me out of them. Also to train me to "accept" my schizophrenia diagnosis etc. Which I now tried to conform to at all times, even when alone, but always terrified.
Anyway, then I got out of there, and was put in a special ed school and some other programs. They listed a number of diagnoses for that including schizophrenia and PDD-NOS both as diagnoses I'd had. I was back to my normal psychiatrist, and he wanted to drop the schizophrenia diagnosis but I was now terrified to drop either the diagnosis or the act. (Afraid of punishment.) So he ended up going along with that. I began to wonder if the diagnosis was correct when a new medication (an anti-depressant) I was on for a year or two, gave me bona fide hallucinations and delusions for the first time in my life really. And the descriptions of sensory overload and motor issues as well as social stuff in the books on it certainly fit me.
So then I had that and similar diagnoses. And then I started going to community college and bumping into massive sensory issues. I got an evaluation and diagnosis of Irlen's syndrome which allowed me to stay in a particular class. Then I got an evaluation and diagnosis of central auditory processing disorder and hyperacusis. By this time I was beginning to suspect I was actually autistic, and beginning to think it might be possible and good to drop the "crazy" act and the fantasy world I'd been sustaining for years by that point. (It was what I did instead of pretending to be normal, since I couldn't, and still can't, pretend to be normal.) I still had limited communication in some ways though, so I could not say everything, and just repeated some things I'd heard about "doing it for attention" even though that wasn't the reason. I was rediagnosed with PDD-NOS at that point as my main disability, which the counselor at college had urged, telling me I didn't seem schizophrenic at all (she had students who were and they didn't fit the pattern I did, which was a much more autistic pattern).
Then I started developing very bad migraines, unbeknownst to me at the time, and those started affecting my studies. I also went off every single one of my psychiatric medications, and the withdrawals were awful but my mind began to clear up a lot. I tried to go to university. The university had an autism department. The woman in the autism department suggested that my psychiatrist change my diagnosis to just plain autism, since that's what it was, and since the insurance thing was not an issue anymore. So he did that.
Also I was exposed to some autistic adults who saw me freezing up and told me there was an article out about a kind of catatonia affecting autistic people and that I obviously had it and so did some of them. So that article got forwarded to my psychiatrist whose response was something like "So that's what she's been doing all this time." I later asked an old psychologist of mine (the one who had me diagnosed as schizophrenic) if he'd observed these motor problems, and he said yes but he'd always ascribed them to command hallucinations.
So by early adulthood I ended up with diagnoses of autism, central auditory processing disorder, Irlen syndrome, CNS disorder NOS (covering my increase in motor and sensory issues over the years, which happens to some smallish portion of autistic people and has made things like speech gradually become impossible), PTSD (I'd previously had it from various kinds of abuse, but now most of it is from abuse in institutions) and then the various medical issues that hadn't been addressed. (I suddenly got many of them addressed when I was 20 and became able to consistently communicate about my body for once. I got tested for things that had been there all my life but that I'd never known to complain about, and the tests ended up positive and I got treatment.)
I was also re-evaluated during an SSI re-evaluation at one point. They wanted evidence from the neuropsychologist and the psychiatrist, who confirmed my diagnoses and added that I had strong dissociative tendencies. He gave me an IQ test and I scored in a very characteristically autistic pattern (including in terms of my strengths), and he asked me some questions, etc. The evaluator basically said it was a shame I was misdiagnosed all that time and let me go.
So that's the very very long story of my evaluation and diagnosis. I really hope it's easier these days because that was hell for me. I also hope that children are told they're autistic, because I began thinking (when the demands of adolescence were too much for me) that I was "going crazy" and tried to act the part and escape into a fantasy world, and that complicated diagnosis immensely. I read later that Mary Newport, while not doing the fantasy world thing like I did, also thought she was going crazy due to roughly the same kinds of skill loss I had at the same age. She also did drugs although they had a much worse effect on her than on me and really did drive her crazy for awhile. This is a real danger when we're not told, what we think might be going on is often worse than what is, and some of us try to live up to expectations, which can be disastrous. (I've also heard autistic people say they tried to live up to the expectation of having an intellectual disability for instance. "Normal" is not the only thing autistic people might conform to.)
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