how did you get the diagnosis?

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Registered: 05-09-2003
how did you get the diagnosis?
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Sat, 09-17-2005 - 2:08pm

I'm wondering how everyone got their child's diagnosis? What were the first clues something was up? Were you the first to notice or did someone else bring it to your attention? Did you go to your pediatrician or a specialist? Were you ever reassured by professionals that things were ok only to find out later that they weren't? I'm just wondering about everyone's story. TIA

Jen
Jake 8-29-03 (apraxia, expressive language delay, SDI, and possible PDD-NOS?)

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Registered: 05-16-2003
Sat, 09-17-2005 - 9:05pm

Hi Jen,

Let's see. Jack was typically developing until about age 2. When Jack was just 2 he started having sensory issues. It was summer and he refused to wear shoes. Ran around a lot at home. I thought "Gee, this is the 'boy stuff' I've heard about!"

He started a little 2s pre-school program and he separated OK but wouldn't "connect" -- he took off his shoes and ran around in circles or sat and looked at books. His teacher (who now is studying special ed as a result) told me when I asked the difficult question "He just needs time." I had a sick feeling, but honestly I didn't know that he could be developing typically and then WHAM.

He became reserved around other kids at playdates and classes. (This was new, and it took a while to pick up on that he wasn't just having "a bad day.")

And he was speaking, even in sentences.... but it just wasn't blossoming like my DD's speech had. He could sing along to an entire CD, so I thought "See! He can say all those words!" DH didn't notice anything and everytime Jack said something he'd say "Listen! He can talk!" but I'd insist something wasn't right.

We took him to Disney World, and he just didn't much care... When DD #2 was born, he was 2-1/2 but just didn't seem connected. He was in his own little world. Asking to watch videos a lot. I asked my ped. and she referred me to EI.

So EI came and told us he had a speech and a social delay, and sensory integration dysfunction. A few weeks later they mentioned PDD. I was SHOCKED. Not *my* kid, they must be mistaken! I knew what PDD was, but it didn't occur to me. But the educator insisted she wasn't sure. Sometimes she could tell, but he was right on the line.

I took him to a very well respected dev. ped. in NYC. A woman who specializes in ASDs...has her own ASD school. He was almost 3. Both the psych who evaluated him and the MD thought that he was just delayed, but again right on the line. That was a relief. But still I had a feeling.... He kinda' pulled the wool over their eyes. He was connected to me, and saying things like "Thank you Mommy" when I handed him something. IDing numbers and letters, playing w/ toys OK.

So then I started thinking "This is all sensory driven." We started special ed pre-school.

Went back the the dev. ped when he was 3-1/2 (different age and therefore a different test) and he didn't do well. PDD-NOS in "full bloom."

So there we are.

Anyway, that's my story (and I'm sticking to it)! Hope it helps.

Cathy

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Registered: 03-26-2003
Sat, 09-17-2005 - 11:58pm

I have 2 that were different experiences all together.

My oldest we knew something was up from a young age but her pediatrician blew us off. Finally at 3 I had recently started working with EI children who were very similar to Cait and was doing assessments and realized something was not right. Pediatrician still blew me off. We decided to take it into our own hands and had a speech eval which showed her to be quite delayed and recomended a plethora of other evaluations.

She was evaluated and put into preschool as a child with special needs. Due to some of her "symptoms" the school recomended we seek a medical diagnosis. By the time we went to the doctor she had been in preschool for 6 months and we knew we were looking at PDD due to her lack of social skills, etc.

It took a second oppinion and a neuropsychologist to get a full diagnosis and she was diagnosed at 4. The first neuro didn't know PDD from ADD. This was over 7 years ago and diagnosing high function autistics was not as readily done then as it is now. Or at least it wasn't as known.

Renee

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Registered: 03-27-2003
Sun, 09-18-2005 - 12:23am
Hi, I'm a nurse & wasn't sure what was going on w/ my dd. In pre-school I told my peds that my dd was a loner & she blew it off. My dd never interacted w/ any of the kids. She used to recite Lion King word by word. She had obsessions. I took her out of public school & put her in a Montessori home based school for 3 yrs. Her teacher thought she had ADD inattentive. Long story short, I put her back in public schools, went back to my peds per teacher request & had evals w/2 psychologists who work w/ AS kids. They all confirmed the Aspie diagnosis & ADD innatentive. She has had an IEP since the diagnosis which took until 4th grade. She is now 12. I wish we had gotten it much sooner! Good luck to you~ Mary Ann
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Registered: 05-30-2005
Sun, 09-18-2005 - 9:28am

Hi, Jen -- we just got our son's diagnosis this summer. Calvin turned 2 in May. We knew something was off for a while, but we thought it was due to his low tone (he's been in physical therapy since he was 6 months old). Anyway, we were concerned at 19 months when he still didn't have any words except "dada." Our pediatrician AND a physical medicine specialist at Children's Hospital said not to worry and that his speech delay was probably due to low tone because his receptive language appeared to be on target. So the months went by and weird thing happened. He hated the vacuum cleaner. He wouldn't play with other kids -- or even look at them. He cried when other babies cried. He played a bit obsessively with certain toys. But he was (and still is) really affectionate with us and had good eye contact with us and people he knew. So we shrugged it off. Then his OT mentioned the poor eye contact with her and his lack of imitation. I freaked out. I again asked his pediatrician, who said it probably wasn't autism. Even his speech therapist said it was probably more due to his low tone. But now I was worried. So we took him in for an evaluation and sure enough -- PDD. That was July -- a mere two months ago.
Since then Calvin has begun intensive speech therapy and special education. It's been a lot of work, but even in the few short weeks, I've seen tons of improvement. I believe by next year, he will be on the right track again. What I'm discovering is the spectrum is very wide and many people -- even pediatric specialists -- don't really understand how wide it is and therefore tend to discount certain signs because they aren't "classic" autism or are borderline. My recommendation is to go for an evaluation if you are worried. It will either put your mind at ease OR put you on the right path for treatment. I suspect if you are unsure of his diagnosis and if does end up on the spectrum, he is probably mild and therefore will benefit greatly from therapy. I wish you luck and please come back to this board often -- these moms are a great resource.

Kellie & Calvin (who is as cute as a button!)

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Registered: 03-26-2003
Sun, 09-18-2005 - 1:45pm

I forgot to give the info about my second ASer. We first thought there was something going on when he was between 2 and 3 but thought it wasn't autism. Denial. We noticed a change in him around 18months to 2 years. He would wake from naps screaming for hours and he had horrible stranger and separation anxiety. We thought he had migraines. And he used to pull things apart. He was a different kid but an easy baby who slept a ton. The only big thing before he was about 18months was the fact that he wasn't fond of being held and the stranger anxiety.

At 3 my pediatrician (who had blown us off with Cait) recomended we have Mike evaluated. One other little quirk about Mike was how much he HATED strangers especially doctors from a young age. he would scream the entire visit every time, had no eye contact with the doctor and no language with the doctor. But he was much different with us at home.

Mike did have language and was outgoing with peers. We assumed his problems were ADHD and SID and that was it. We started having him evaluated at 3 and going to doctors. Some questioned ASD (Which this time we shot down the numerous times it came up) and others just didn't know what the heck was going on. At 3 a neuro questioned SID, auditory processing and PDD but said he needed more evaluations. We went cross country. By 4 he was diagnosed SID and severe ADHD and put on meds which didn't help. After nearly 3 years of ADHD diagnosis and meds and getting worse we took him to another neuro who diagnosed AS at 7.

Mike could have been diagnosed on the spectrum at 3, but because of his stronger language skills than his sister and he was more outgoing then with peers, we goofed and denied it.

Renee

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Mon, 09-19-2005 - 12:38am

I'll warn you up front, this is kind of long. :)

Well, for us, we had NO trouble with David at all except for the fact that he had a really hard time falling asleep at night. (Incidently, we just started giving him melatonin, and he's been falling asleep normally for the first time in almost 8 YEARS!) We knew his mind worked differently than other kids', and we smuggly thought of him as "smarter" than most. He had an attention span that went on forever, had zero behavioral problems before the age of three, was brilliant, happy, and was just amazing in every way...but bedtime was so horrific it cancelled out a lot of the joy of the daytimes.

But at about the age of three, things began to change. On the surface it looked like he was becoming willfully defiant and "testing" us. I read every parenting/discipline book and website I could find, and each one left me saying, "No, no, no, What about MY kid???" Sometime around age four, we went to a family therapist to "find out what we're doing wrong." I knew in my heart that DH and I were being good parents, but it was such a relief to hear the therapist say so, and that she thought something was going on with David. She recommended a developmental pediatrician, but we couldn't get in with him. His admin person told us the doctor said David sounds like "too extreme" of a case for his year-long waiting list (by this time, he was exhibiting signs of psychoses, which we didn't recognize as such). Our family physician was absolutely no help at all. So, the next year was just awful. I mean, REALLY awful.

In kindergarten, he was very disruptive and unable to do much of anything. This is a child who beat me at chess when he was just three (okay, I'm lousy at chess, but still!) and was reading chapter books at age 4. The teacher managed to get him an evaluation with the school psychologist half way into the year, and she said his results and behavior/symptoms were consistant with Asperger's. She wasn't qualified to make an official dx, though, so she recommended that we find someone who could, although we didn't know how to do that.

Things got progressively worse. I began to see clear signs of mental illness. He began freaking out at sounds that no one else could hear, and crying that he wanted to die or wanted the whole universe to disappear, including himself. This was a turning point, because it suddenly was crystal clear that he was NOT behaving badly for attention, spite, or anything like that, but that he needed medical attention. Out of the blue, it occurred to me to dump the family physician and get a real ped. Best move ever! She was excellent AND she personally knew a handful of developmental pediatricians, and got us in with one of them the following week. She did an evaluation that resulted in a dx of Asperger's/mood disorder-NOS and a mood stabilizing medication.

I did not experience the sadness that a lot of people do upon getting the dx. She confirmed what I had figured out for myself, and the fact that he was finally going to get some help was such a relief. More specifically, I was happy about the fact that he was going to be treated for the mood disorder, which was becoming bad enough to be life threatening. I was also so relieved to finally have a bit of understanding as to why he's so incredibly *different* from any other kid. Once the medication got up to a therapeutic level, I had many "tears of joy" moments when he did normal little-boy things, like smiling and laughing (not maniacally, but normal HAPPINESS.) We had lost our little sweetheart, and now he was back. Wow! Now I try to take it one day at a time, but I know there is a good chance that when he's 15, and taller than me, he'll suddenly decide he doesn't need to take his meds. But that's too scary, so I try not to think about it too much.

Evelyn, David 7 3/4 Nathan, 4

Evelyn

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Registered: 03-31-2003
Mon, 09-19-2005 - 7:45pm

I am the one that had some concerns, and when I expressed them to Ian's pediatrician, she agreed to make a referral to the speech therapist. I have never been around kids before, so I probably missed some of the signs, but what struck me with Ian was that he had learned about 7-8 words by the age of 15 months, and then slowly lost the words and was not really adding to his vocabulary.
The speech therapist was the first person to mention something was possible really wrong with Ian. After her initial eval she referred me to early intervension through our county, as well as the Developmental Assessment Clinic through my HMO for further testing. I did EI and the DAC independant of each other because I did not want them influencing each other and wanted to distinct evaluations. Within 6 weeks we had completed the evals with both agencies and both came back with an ASD diagnosis.
When Ian was 16 months old, I was reassured by my ped that boy develop language slower than girls, but that if I was uncomfortable she would make a refferal. So, 2 months later when I called her, she had no problem with making the refferal.

I felt bad for my pediatrician because she was crushed when she found out Ian's diagnosis. She called me to discuss what symptoms he was presenting that she missed and we agreed that she probably did not miss anything in the well baby visits per se, but I did mention to her that the early detection checklist for autism (M CHAT?), if she starting using it, would have probably focused us on autism immediately because once I completed the checklist on my own (I was doing autism research once the speech therapist mention it), I knew Ian had an issue.

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Registered: 03-27-2003
Mon, 09-19-2005 - 9:31pm

For us it was more the behavioral problems, quirky behaviors, and low frustration tolerance. I thought he might be slightly ADHD, ODD so I went to a family behavioral center for testing (after trying to fix it all on my own for 3 years and searching the internet for help and advice) He's 11 so we definatley got a late diagnosis. I still question it because he doesn't have all the issues, his are mainly the upset over transition, difficulty with processing, understanding boundries, impulsive behavior, depression, anxiety. He is such a quirky kid, smart and sweet yet inconsiderate and lacking total common sense. To me the Aspergers explains some of this, knowing helps me to understand he doesn't have control over it and helps me to deal with him more effectively. I know he had some issues as a baby but there were not that obvious, it was like he could go off somewhere, his eyes were in another place it was as if he didnt understand he was a person and wasn't picking up on the cues from others, like how to respond to another ect. He was also very intense in his temper tantrums, but he was my first so I thought that was just how it was. It wasn't hugely obvious, but looking back I can see it.

Amanda

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Registered: 10-03-2004
Tue, 09-20-2005 - 10:26am

We didn't get the PDD-NOS dx until a year and half ago when he was almost 7, but started him out in therapeutic pre-school at age 3 with dx of developmental delay and severe SID. Moving him to a special needs elementary school with strong academics, he received dx of anxiety and receptive-expressive language disorder. Now he has dx of PDD-NOS, but the dx is considered borderline and was given to him so that he could attend ASD school where he is now flourishing, and boy, living with him, I would say that it is true that some days he seems ASD and some days he doesn't!

But, as a result of this timeline, I have never thought of Malcolm as autistic, even though in many ways he is. We talk and think more specifically in "challenges", working on coping techniques for lowering anxiety, assisting comprehension and self-expression. He has learned so very much, and is now picking up on cues from other people more, thinking more big picture, capable of much more self-control. If I think too much about the dx, I can get very overwhelmed and frightened for his future, if I think smaller and more in terms of his challenges, I get more relaxed and hopeful for where he can go in his life!

Works for me for now,

Sara
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