DX at a later age? | Autism PDD

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Well...my stepmom's son was not dx'd until he was 12. Now he is my age (25) so it was awhile ago and things were diff I guess. Less people and dr's new or understood the disorder than today and what not. He was dx'd adhd, tourettes, slightly mentally retarded, you name it they tried to pin it on him. She (my stepmom) kept having to fight dr's and specialists saying that wasn't it. They kept misdiagnosing him and medicating him w/ all sorts of diff stuff (which she said usually made things worse not better and refused to medicate him further after awhile) until finally at 12 they said autism. She had a very long hard fight over finding out things w/ her son. But luckily things are starting to change I think. Many people know something about it now and dx'ing seems to be happening earlier. Don't get me wrong there are still so many who don't understand and dr's who have no idea what's going on and misdiagnosing and all. But it has improved a lot because of all the stuff on tv and inet. Some people I've talked to know about it that I never thought would like some friends and coworkers because of all the hype out there now w/ it being such an epidemic. Hopefully it will only get better...knowledge and understanding of the disorder I mean.

Amber

o.k a quick ?. Are there any of you whose children were dx at a later age instead of earlier in life?If so did the docs say why it took so long to dx them? and did you know sooner than the docs did? oh that was more than a quick? sorry, my brain is working overtime right know. just trying to get more info for my own personal reasons. thanks again.mom2carlo

well, keith was dx at 4.5. that is late to me. now seeing and reading more on it, i am wondering about my 7 year old, and his possibly having something on the spectrum. i am so pissed that my ped never mentioned anything about ahything. it was not until keith was 4, i went to him and said ok, he's 4, i KNOW he is adhd, and i need him to try some meds...then the ped decided to send me to a specialist b/c he  does not like to med 4 y.o.'s          duh thanks!

PRACTICING MEDICINE!

kate

 

Riley will be 9 in October...we're working on a dx now.  I trusted the school too much for too long.  He's had some severe health issues that took us "away" from looking closer, I had to go through 12 pediatricians in order to get him help, so no one really "knew" him well enough (he has a rare syndrome, only 3000+ cases worldwide called "CVS")   Although - I tried for a year to get the school to re-evaluate, (so did his teachers, who all seemed to know) they finally did this year, and I'm still taking him to a Neuro and Child Psych to be sure. 

He is/was originally dx'd with Verbal Apraxia, Speech Delay and Sensory Integration Dysfunction, so he's been receiving therapies (ST/OT) since age 3, made HUGE progress...so I'm not sure how he'll ultimately be dx'd.

~Lesley - mom to Smiley Riley

well then maybe 4 1/2 is not too old if they are hf. hf at early age JUST looks like adhd (IMO)

kate

 

My GS was not diagnosed until 4 1/2.
We knew there was a problem, but the ped. couldn't see it.
We were put on a waitlist at our insistence, and with our med. system in Canada waited 1 1/2 years for an evaluation.
He was finally diagnosed at 4 1/2
I think that HF kids, ofen slip between the cracks, especially if they are verbal.
I become angry with myself, as I should have taken him to a private psychologist instead of waiting so long.
I knew nothing of autism, but finally through research, came to this conclusion at exactly the same time as his evaluation appointments were to begin.
I would tell any parent that if you have any suspicion, don't wait.
Don't rely on your ped. to direct you.

some of you guys have mentioned you dh being hfa....i wonder how i could get my dh diagnosed, or at least evaluated....

he does things, and after having read so much on the subject, i will comment to him that "that is a very autistic characteristic" and now he says i am over analizing him.

kate

 

Thanks to all of you, Carlo has a dx of pdd-nos,adhd,seizure disorder and cp with diplegia. so maybe they look it over because of the adhd? whoknows. he got the adhd dx right before he turned 3. i don't know i still think they should of caught it sooner, cause i feel what if we had known sooner, we could of got him therapy sooner and maybe know it wouldn't be so hard. his physc doc is also warning us of bipolar, but he says he won't know for sure until he gets a bit older. thanks again.mom2carloConnor was diagnosed when he was seven. At 4 1/2 he was evaluated by
the school district psychologist, and Cal State Northridge Speech and
Language Center, where he was receiving speech therapy. The closest
thing I got as far as a dx went was that the school psychologist called him
an "enigma". I took him to a private diagnostic psychologist when he was
seven, and she dx'd him HFA/Asperger's. As soon as I had that dx,
everyone else nodded their heads in agreement and fell into line.

My son Takoda was Dx in April and he was nearly 4 1/2. I used the schools resources to get him diagnosed (Headstart). Ironically the same school in the preschool doesn't like the label HFA they are much happier with speech delays or being even more vague and saying delayed child.

I have had to fight them a little already but they are supposed to have added HFA to his IEP. I'm not 100% sure because I filled out the paperwork for respite care and the woman from the school said, "Oh just put delays or speech delays the autism isn't really nessisary."

I know that the school has made great progress with him I just can't understand why they think labeling him autistic is THE KISS OF DEATH!!!

I also have another son who is 10 and has some simular problems (not as extreme) and his school feels he is just a behavoral problem (ODD) and their answer has always been dope him up something in a pill that will fix him. Nothing in a pill has worked to this point. I am thankful he has a child phys. who is trying to get to the heart of his problems now. I'm not against meds. for him but they have to help and knowing what the problem is first might help.

I would say from my experience with my 2 boys if the symptoms don't scream autism they may not be reconized til much later in life. From the tests I've done online for Jared it does appear as if he is mildly on the spectrum and working in these areas might actually do some good.

Nelle

[QUOTE=Swiss001]

Ha! I beat you all!

Adam was 16 years 9 months.  Why so late? 'Cause my dh acts the same way, and I figured it was just a genetic trait.  At least I was right about that one!  Heck, it's just Aspergers... being facetious here.

[/QUOTE]

This is the same reason it took awile for us also.. Everyone talked about how he was so much like me and I turned out fine!  (I did?) LOL
My dd was dx PDD-NOS at 5 1/2.  I can see why it was missed because she it atypical in that she doesn't have stims (I guess I should say that she doesn't have stims that stand out since we all stim IMO).  She also does well academically and doesn't have an aide.  I can see why she was easy to miss.  Plus, her social issues didn't really come to light until she got older.  She has been in speech since 2 though so there has always been "something" there.  I don't think I would have had my boys dx this early either if it hadn't been for my dd's dx.

kdchaos39507.5521643519caleb was just diagnosed at 3.5 and that was through the school.  for now, i am content with the diagnosis because it is giving me all of the services i need for him.  i am STILL waiting for doctors to schedule actual appts for specifics, although i am afraid to get the diagnosis on his medical record with insurance, etc.  i knew something was diff from the beginning.  being that he is my only son though, i had nothing to compare his behavior to and everyone, including my pediatrician, made me feel neurotic!  i never would have guessed autism if i hadn't run into a friend from my past who has an autistic son (her only) and went through the same stuff i was going through.  then the light-bulb went on.     My daughter is 6.5 and was dx'ed ADHD at 3.  I knew this dx was not right and have been fighting ever since to figure out whats really going on with her...then I stumbled here and we now have the ball rolling.  A full school eval and an appt with the dev ped ~ sigh.  This was a long time in the coming and I would have liked to catch it sooner, but like others have said, when they are high functioning it is easy to pin other labels on them.

Well I think for one thing it is delay vs. disorder ... some kids catch up, while others do not catch up as quickly!

Then the other thing is, I think some kids seem typical, up until a certain milestone/s is are not met.  With T she had to develop enough to demonstrate prag/sem speech woes ... as well as social woes ... before anyone really "got" that something was going on.

And of course, there was the prevailing attitude, "she's just adopted, has post-institutional delays, language interruption -- she will catch up."  And we all wanted to think so.

I work, professionally as a special education advocate. I see many TEENS just now getting diagnosed. In many cases, young children are able to "pass" if they are high functioning enough because the things that are expected to do at such a young age are within their capabilities. Oftentimes, they are getting some sort of help because they are seen as having a learning disability or having ADHD (the symptoms of which are present in most ASD cases).  So they ARE getting support, which helps them pass. But that support helps only for so long. Also, the world STILL sees autism as something pretty exotic. A disability for head-bangers and weirdos (sorry to say this, but it remains true in some quarters). So, when a child who seems to just have behavioral issues shows up without the classic signs of autism, evaluators don't recognize the underlying autism. I'm happy to say that that's changing nowadays, but some vestiges are still around.

The key is not what has happened so far in this child's life.  It's what happens FROM NOW ON that counts. Good luck.

My son was 7.  The first reason was that he wasn't that different from his male peers -- at least to the untrained eye -- until the demands on them increased at about age 5.  The second reason was that we had to deal with long waiting lists (we have socialized medicine here).

The third reason is that we're a bilingual family.  This makes it harder to sort out the symptoms.  Your son has CP, etc. and I'm sure that made it harder to sort out the symptoms, too.

 

 

My Daughter was diagnosed adhd about a year ago and then diagnosed with HF autism just 2 months ago. She is now 14. I am having big problems with the school now as she copied her way through primary school so her lack of abilities were not picked up on (or they did not care) She cried for hours as a baby and seemed to enjoy crying. I had to put her in her bouncy chair to feed her as she hated sitting on your knee to get fed. She wouldnt let you cuddle her to put her to sleep. The weaning period took for ever as she choked on everything I gave her. She took forever to come out of daytime nappies and wet the bed till she was 10. She did not listen to a word I said and wrecked the house everytime you used the word no. At school she screamed and kicked every morning when I dropped her off until she was about 9. She still hates school. The only help she received was speech therapy when she was 4. I couldnt have complained and asked to get her evaluated any more than I did. It was only when she started to have meltdowns at school that she finally got diagnosed. I am now fighting the system to have my 9 year old daughter diagnosed. She was diagnosed at 4 with dyspraxia and a suspected conduct disorder. She got 3 months of gross motor skills therapy and hasnt seen anyone since. Do you get the feeling nobody cares? It makes you feel so sorry for kids without parents who have nobody to fight to get them help. Tess1777239507.1102430556

I belong to a support group here in Australia and we have quite a few members whose children have only recently been diagnosed. Their ages range from 9 - 15. In most cases the parents were simply ignored when they went to doctors, some were given ADHD meds.

Mysh

My son was 6.5 @ time of diagnosis well like i said in another post my son is turning three on the 7 of march  me and my husband had to do all the work in getting help when he turne two and we realized that he has went into his own world from 18 mth.s on...we just didnt see it cause of our own problems we were dealing with the ped. had nothing to do with it but when we noticed it i looked things up and talked to a friend who also had a child withautism and got him into a program with first steps and i again had to get them to get him eveluated with a phsycologist to see why he was the way he was i didnt know what was going on so i really didnt rely on ant one except my gut feelings on this and that usaully what you have to do in situations like this.....My daughter was diagnosed when she had just turned 3.....her language just wasn't developing.  There were other tale tale signs that we see now, but not glaring.  We kept hoping she would catch up....and now the gap widens!

My son was 8 when he was diagnosed.  He's pretty social, so I think that contributed to being diagnosed so late.  He had been getting services since 13 months old for a variety of other diagnosises (sp?), so clearly there were issues from the get go.

Tiffany

Ha! I beat you all!

Adam was 16 years 9 months.  Why so late? 'Cause my dh acts the same way, and I figured it was just a genetic trait.  At least I was right about that one!  Heck, it's just Aspergers... being facetious here.


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