Can’t tell they’re autistic | Autism PDD
Home of Autism-PDD.net To Message Boards Site Map Free Autism Seminars

Can’t tell they’re autistic

just curious.........for those of you with the kids that are functioning high enough that people don't "see" the autism or don't believe it or whatever, how do you feel when friends/family say something like "If you hadn't told me, I would never have thought that" or "I can't tell they're autistic"  "they don't seem autistic to me" etc. etc.

My dd is hf enough that I hear this a lot. I'm working on recognizing that for being the "GOOD" thing that it is to hear, and not always wanting to respond with "yeah, but it was so much work to get her here"

Just wondering how you generally take those types of comments??

Chris looks normal until you start a conversation with him then after 5 min. you know  it's also in the way he runs,......   i have been told by the autism team that Chris' dx is autism  the only reason is b/c he can mentally go in his little labyrinth world and stay for up to 7 days Praise God he has not done that in about 8 months but he functions on the Asperger and HF level. yet this child deals with more than most adults on a  hour to hour  scale  . he is the coolest kid I have ever met. a little bias i guess

                                         just a mom

Junior looks and acts normal now that he's been in school and only me and my DH and MIL can tell the uniqueness - It kills me because people are so quick to judge and don't realize that autism is not something that can be seen and understood by everyone and that they don't take the time to pay attention and read through the lines. I am actually trying to do some cards that "Express" what they need to know.It doesn't bother me at all, and I politely thank them, and add that we've all worked very hard over the past 4 1/2 years to get him to this point.  If they seem genuinely interested, I will elaborate on some of the challenges he still faces on a day to day basis, but the fact the he "passes" in the NT world with so much time to build on his skills and improve his deficits, is one of the best feelings in the world for us  Most of the time I say," Thanks for the compliment,she works hard in therapy each week!" or sometimes I say," She's come along way" sometimes I just say" She's making great progress"- Really the most important thing I try to tell others about Autism is that though it is not 100% cureable, it is treatable!  I do not care how it sounds its the truth and I know it! I also like them to know that there is not just one typical type of Autism! I one time said to a person that I did not care for too much after a comment that my daughter looks like a normal kid..."yes, Autism is invisible " I do not care if people think I am a nut!I hear it a lot and it doesn't affect me either way. If they lived with him, they'd know something was "off"  I guess it's good for Lucas that he can "pass" for typical. That way, if he's in one of his unusual "friendly" moods, the kids will talk to him :)

That's kind of how I feel. Although, as he gets a little older the differences become a little more marked. Not necessarily with adults - with his peers. His peers are playing games with each other and switch what they're doing constantly - he just can't follow along and after a while he gives up. Adults still see this cute kid who has an incredibly vocabulary and sometimes says things that just blow you away. He also has nice manners (most of the time!) and he particularly likes to hold the elevator door open for people who are getting off and on. People get very impressed by this and no one would ever guess that he has autism during these encounters. Ds even has fairly decent conversations with people in elevators - I'm starting to think maybe we should do some "elevator therapy!"

My parents are in denial - we haven't even used the word autism with them - just that he has a neurological disorder. They don't believe it at all and say he is just very bright and bright people don't interact the same as other people. It makes me wonder what they think about me, since they always told me I was so bright!

Moms that have kids on the spectrum are always telling me how fortunate we are for ds to have so much language, to have him WANT to interact with other kids and that he actually tries to do so. But, that is why there is such a wide spectrum - we have other issues to deal with. The ODD stuff, the meltdowns, the fine and gross motor delays, the non-stop obsessing about hurricanes/tornadoes/weather and the non-stop running and jumping (and always having to have something in his hand) when he's at home in his "downtime".

I try to say "thank you" and that  "he's come a long way" (which he has) but, especially to those moms, I try to point out that he has other issues he is working on. I know how it feels to do that comparison thing (I used to do it all the time with NT kids) and so I want to make sure that they know that he does have some strengths but we also have other areas to work on. A lot of them don't have the fine and gross motor issues that ds does, for instance.

Anyway, it is hard but I think it is important for people to understand that just because s/he is "passing" for NT does not mean that there aren't issues there. I feel it's about educating others and making them aware...

Daniel has not been told he has ppd. Only 1  dr agrees. Wife was told at Easter seals sounds like regulatory problems. Daniel started therapies at 1. I think the Dr.'s our in Denial!

I am surprised tzoya hasn't popped in on this - but I will try to give it a shot. Tzoya, feel free to correct me here if I'm wrong... (or anyone else as well).

First, I would like to say to fatheroftwo - it is good that your son is making progress and doing well. I would also like to tell you that I didn't suspect my son had any issues (besides a few obsessive things) until he was close to 3. To me, he just seemed like a very bright child who preferred the company of adults and would talk their head off. He had a few obsessions, but otherwise didn't have much in the way of behavior issues - besides what I considered "normal" two year old issues. I am quite sure even if I would have suspected that we would not have gotten a diagnosis from anyone. As it is, we had to fight for one at age 4.

Second, PDD is the umbrella term for five different disorders. It is NOT a diagnosis. Anyone who says their child has a diagnosis of PDD is not correct. You can have: autistic disorder (which is "classic autism"), Asperger's disorder, Rett's disorder, childhood disintegrative disorder and PDD-NOS (pervasive developmental disorder - not otherwise specified).  PDD-NOS is often used when a child only meets 4 or 5 of the criteria and/or had 6 or more of the symptoms, but not to the degree of severity that is required in the DSM-IV.

Third, I do use the word autism when referring to my child. He is on the autism SPECTRUM. I say that he has a very mild form of autism that you might not realize unless you spent a lot of time with him. Sometimes I add that his diagnosis came from the Mayo Clinic - that adds a little oomph to it as well!

Lastly, I do limit who I tell. It is not that I am ashamed of my son or who he is. It is totally against my nature to not tell people. But I try to remember that this is HIS  life, not mine. So who I tell will impact HIM. He is not old enough to fully understand what he has and/or be able to decide who should know and who shouldn't know. Until he is old enough to make this decision, then I feel like I need to only tell people whose care he is left in. Occasionally I will tell rude strangers (I try to do it in a nice way which is REALLY hard!) in the hopes of raising their awareness about autism. Whether you like it or not, PDD-NOS is on the autism spectrum and I think it is only to our (and our children's) benefit to raise awareness among others - otherwise everyone will CONTINUE to go around associating autism with Rain Man! My son generally flies under the radar, although I notice as he gets older his differences are more noticeable. But he has made huge strides. Autistic Spectrum Disorder does not go away. My son may eventually "pass" as NT, but it will always be more of a struggle for him than for others. We have also encountered loss of friendships when we have shared his diagnosis (obviously not true friends, but still...) so I am very cautious as to who I tell. Kids at this age are generally pretty tolerant so if my son makes friends with a child who has a mom I wouldn't dream of telling - I just invite that child over often and closely supervise my son when we go there (much less often). I don't want my son to lose connections he is working so hard to build.

I also go to a board where there are adults who have Asperger's Disorder and I have learned tremendous amounts from them, plus gotten lots of encouragement. It is helpful to understand that it probably DOES relieve stress for my child when he stims. And, they also told me to limit him on the amount of time (which I already do) as I don't want him to become totally focused on his world.

I haven't read through all of the posts - sorry fatheroftwo I just couldn't slog through all of it - but I will go back and read it. So, if I misinterpreted anything I apologize. But, I wanted to make sure we are all on the same page and understand that PDD-NOS is considered to be on the autism spectrum.

Yeah, I was just replying to the question in the original post from the point of view of an autistic person.  I wasn't talking about parents telling my friend she doesn't seem autistic, I was talking about random people who don't know what autistic people look like, and stereotype my family or friends in all the ways some of the parents here have been talking about their kids getting stereotyped, as "not really autistic" if they can pass. Hi Gtto...I remember you from posting before, and once again, am sorry this post has upset you once more.

I think the "real" question with the initial post, is that some parents are often questioned about their "being autistic" because in many cases, it is not severe, or not the "stereotype" of what they believe in their own minds Autism is.  We are mostly all parents here, and as much as it bothers you to hear the reference of "looking autistic", it bothers all of us as well....what they really should say is, "I didn't realize that there are so many variances in people with Autism, much like there are variances with ALL people EVERYWHERE!"  That would take care of those comments!!! 

Stereotyping in any way is judgemental, and more often than not, completely incorrect.  Again, I think that was the feel of the original post, I may be wrong, but I don't believe so....please correct me if I am.

Oh my do I disagree with fatheroftwo as well!!!! I also find that knowledge is power and the only "harm" in an early diagnoses is to help your child reach his or her full potential by doing all you can as a parent to ensure they do have a normal education and function well in society. If you wait until they are of school age to see if symptoms improve or dissappear, you have wasted valuable time that could have been used to help your child.

On another note, I was glad to get a diagnoses of PDD for my son at 18 months- I feel that it helps me to explian to people why he is so painfully different than other children and that he is not lazy or just slow to develop. PDD is listed in the DSM (Diagnostic and Statistical Manual) under autism for a reason- it is in the autism spectrum!!! A lot of people that know my son say oh he can't be autistic because he is funny, sweet, and has a great personality- I just try and explain some differences and challenges that he faces and then talk about what he can do well.

In response to the original post, My son has Aspergers and people will tell me he looks normal, but if they spend any amount of time with him they find out different. When they tell me how normal he looks I just tell them he has had alot of therapy and we would not be where we are today if he had not had it.

fatheroftwo- i never looked at getting a diagnosis for my son as "labeling him" I got a dx for my son because i wanted him to get the best help he could. I dont care diddly squat what other people think about that, . Most children dont know or do they need to know that my son is autisitic. The dx is for those who work with my child to get a better understanding on how to serve him and his needs.  Also I did nto want my child to go to school and be "labeled' just a behavior problem and without a dx I am afraid that would happen to him.

For some reason those comments often annoy me. It really depends on who is saying it really. I guess it's because often when I get a comment like that it's like they are trying to say in a nice way that maybe I'm the one w/ the problem labeling him when he's just fine. Like I said depends who is saying it or how it is said. I usually just go "uh huh" anymore and drop it. It's pointless to go on about how it has taken 14 mths of St and 9-10 mths of OT to get him where he is and he's still got so many things going on. There is so much others don't see. My mother told me she didn't really see much wrong w/ Aiden when she'd come to visit (her comment is one that didn't bother me because she wasn't saying it like it's not true he has autism or something). So recently she called me and said she decided maybe she just had no clue what autism was (goodness knows I didn't know more than Rainman. Took me mths of research to even believe Aiden might be ASD). So she went online and did a bunch of research on autism. And she says she sees it all now and can totally see how Aiden would have moderate autism. Basically it's just impairment of diff things and things that come naturally to kids doesn't to him is basically what she said. I said yep that sums it up well. So now I figure it's just lack of awareness as to what autism really is. And of course it's that putting all autistics in a box syndrome too. People think that they all will act and be the same w/ the same issues which is so far from the truth. I used to comment back now I rarely do. One time I did ask nicely "do you know what autism is or what it means?" The person said "well...no not really." Then I just dropped it. I think that got the person thinking. Why were they even trying to act like they knew what was going on w/ my son when they didn't know squat about the disorder? LOL. Oh well

Amber

Wrote this before reading any replies in case I'm off subject by now lol. I wanted to answer the original post before I lost my thoughts.

DovesNest38891.740787037In response to the original post, people often tell me that they can't tell he has PDD-NOS.  When someone who doesn't spend alot of time with Anthony says it - it doesn't bother me.  He does seem NT if you're not paying close attention.  He doesn't have a lot of stims or quirks.  His main symptom is his speech delay - which is moderate to severe - but because he's so young people don't pay close attention to that.  They understand once I explain it to them.  Also, I think people are just trying to be nice.  It's a wierd way to be nice but I think they just don't know what to say when you tell them the DX.  I do, however, find it annoying when people in our family (who know Anthony well) are in denial. 

Fatherof2... I just want to throw a fact at you to ponder about. 

The company I work with has been treating Autistic children for 25 years with Lovaas' technique for ABA therapy.  They studied with Dr. Lovaas.  This therapy is the only therapy that has been researched and proven to have CONSISTANT Positive results in autistic children.  (That means PDD-NOS kids too ).   Interesting fact they have found out..... optimal age to reach a child with Autism: 3-5 years of age.  Why?  Because after the age of a 5 a childs brain SLOWS down and it is harder, even for NT 5 year olds to process information.  This is why they say time is of the essense with these kids.  School age kids still learn at a faster rate then say teenagers and so on... but as the years go by, the brain continually slows down in processing information. 

Do I believe older children can't benifit... NO WAY.  Of course they can.... it'll just take them a lot longer. 

I wish you the best of luck with your son and You do know what is best for you child, I just wanted to throw some information out there that not many people stumble apon when doing autism research.

My oldest son has two diagnosis from two different doctors - autistic spectrum disorder and PDD-NOS.  So is he autistic or not?

As the doctor who gave the PDD-NOS diagnosis said, it's all a matter of personal experience by the doctors.  My son may have displayed different behaviors with one doctor and not the other.  They may have looked at different criteria in different ways.

I don't feel any shame in saying the word autism.  I am not labeling my children.  They are autistic, they always will be.  I hope that one day it will be subtle enough that nobody will notice, but I am in no way embarassed to tell people that they have autism.  I think we need to spread awareness, not pretend the labels aren't what they really are.

Here maybe this site can help ...

http://www.bbbautism.com/diagnostics_psychobabble.htm

In everything I've read, I've always assumed that ASD and PDD are the same. Autism Spectrum Disorder and Pervasive Developmental Disorder. They are the same. Now--within the spectrum PDD-NOS is in there. PDD and PDD-NOS are NOT the same. PDD-NOS is under the PDD/ASD spectrum.

I have read in my son's charts different classifications. One time the Dr wrote that he has PDD and then same Dr writing High Functioning Autism or Aspergers. HFA and AS are both Pervasive Developmental disorders that are on the autistic spectrum. If he was dx with PDD-NOS--I would consider that autism also. That is also in the spectrum.

PDD or pervasive developmental disorder is a behavioral disorder of speech, communication, social interaction, and repetitive type compulsive behavior. Autism is a form of PDD.

Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. These disorders are usually first diagnosed in early childhood and range from a severe form, called autistic disorder, through pervasive development disorder not otherwise specified (PDD-NOS), to a much milder form, Asperger syndrome.

 

[QUOTE=sallys]

just curious.........for those of you with the kids that are functioning high enough that people don't "see" the autism or don't believe it or whatever, how do you feel when friends/family say something like "If you hadn't told me, I would never have thought that" or "I can't tell they're autistic"  "they don't seem autistic to me" etc. etc.

My dd is hf enough that I hear this a lot. I'm working on recognizing that for being the "GOOD" thing that it is to hear, and not always wanting to respond with "yeah, but it was so much work to get her here"

Just wondering how you generally take those types of comments??

[/QUOTE]

 

Hi Sallys,

 

My daughter is almost 4yo, ASD. My dad was here from TX a few weeks ago and hadn't seen her since last October or so. Although he can remember when Katy was 1-2 years old and walked in circles saying, "Uh? Uh?" most of the time, he says that he wouldn't know that she is ASD unless he already knew it, lol. EI has helped her so much! I take his remarks as a compliment! As you say, we've worked so hard to get her to this point! But......on the other side of the coin are the insensitive remarks from others who seem to do nothing but poke and prod at your feelings with their comments......as if nothing is wrong with your child and YOU are the problem. No one can really know how it is unless they live with or see your child everyday.

 

It's good that your child, like mine, is high functioning. People can say whatever they want. I know what it took to get this far - and so do you, and many others on this board.  

The things people say- my MIL asked me when Makenna started special day class preschool about o month ago-  "Oh, did she just love it?"  My high anxiety, TERRIFIED of other kids ASD child?????.    Yeah, sure she LOVED it.   Whatever???????!!! Today, when I was telling her that since school has ended for the summer, Makenna is no longer waking up 4-5 times a night.  She's so much less STRESSED.  We were talking about how stressed she is and they arent even TRYING to get her to interact at this point and she said "Oh, it will come. She'll get used to the other kids."  I think the fact that she's my MIL adds insult to injury-  she just rubs me the wrong way.  Like we havent devoted our LIVES to "get her used to the other kids."   It's just that simple, sure.  I guess just like everyone else has said, they just dont understand.  I just wish family members would take the time and make the effort TO understand.  THAT would be the best way to show how much they care.

[QUOTE=FatherOfTwo
My cautionary message is to protect your child's feelings of self-worth
and normalcy at all.[/QUOTE]

I do see where you are coming from first of all. But wanted to say that I, personally, am not ashamed that my son is autistic and I won't let him be ashamed either. And often, they will realize as they age that they are different. I hear it on here all the time that so and so is having trouble in school and upset they aren't making friends, etc. I won't hide what my child has from him or anyone. My 5 yr old dd knows Aiden has autism. She doesn't fully understand and we don't go into huge details. Just like when she asks about the baby we're going to have I don't go into details about how it got there lol, I say simply it grows in my tummy like something in an oven then it comes out. But she asks questions about why he has ST or why he does this or that and so I explain he is just a little different and has autism.

Anyhow, I guess I'm saying that you want to be age appropriate and you don't want to make EVERYTHING about autism w/ your child, but I don't think it's wrong to let him/her know that they have the disorder. If my son had any other disease or disorder I'd not hide it from him when he got older. And like I said many understand they are different when they age and I think it would be better they know and understand their disorder. Of course wording is everything and you don't want them to feel like they can't succeed. I have mild ocd and gen anxiety disorder too and probably adhd/add as well. I'm aware of it and it doesn't upset me or hold me back. But it's good to understand my own problems or challenges. Anyhow that's all I wanted to mention on that.

Also in some states w/out the right dx you can't get the services needed and I get SSI for ds which helps so much. I couldn't have if I hadn't decided to have a professional look into my son. And I agree also w/ something above that was mentioned on catching the child early on and often having a huge difference in their prognosis. Not saying an older child can't progress...not at all. But it has been shown often that if a child begins intervention before age of 3 or by 3 they progress well compared to waiting. At that young they are still "spongey" and more willing to be drawn out. As they age there is this window that can begin to close. At least that is how dr explained to me. And I swear I could feel that window closing w/ my son. We drew him out just in time imo. He has progressed so well now. But he is still autistic no matter how much he improves. The goal is that w/ therapies they will function well in society and even be almost unrecognizable to the untrained eye as having asd of any sort. So yes, your child may do much better after therapy that is what it's for. But doesn't mean the child won't always have asd.

Oh and about above just to clarify I am not trying to put anyone in a box and not saying if you get help at 2 you'll do better than a child that gets help at 5. It depends on the child's personality, iq, if they have retardation, how severe the autism, etc as to how they progress. But was just told in general the earlier the better.

Amber

DovesNest38891.7615972222

Hai father of 2,

Though I might sound like I like being controversial, I could really empathise with what you wrote in your mail. that seemed to echo what I feel at times.Where I live, a special kid is always labelled as a retarded child and it is very difficult to get schools to accept such children. I worry very much at times about what my child will have to live through. It is always a label and it will not be possible to remove the label once people come to know. My son also passes for NT but for the ADHD and lack of speach( verbal now but with echolalia).He plays with other kids and with us, not many traits of PDD, his SQ is 91 so the psychologist and neurologists who evaluated him gave the Dx of SLD only not PDD.But I some times feel that he may be  PDD. I feel it is better not to tell every one you know  that our children have some dosorder but only to close family, but even that brings discrimination.

shine 

Hi all, I just thought I'd give my take on the debate.  I thought that FatherofTwo was concerned that when a child gets diagnosed and hears conversations about the diagnosis then the child would no longer progress as much because the expectations of the child change. (Hope thats right) He didn't want that to happen to his son until he had reach his full potential.(Hope i'm making sense).  My son whose 11 was diagnosed with ADHD and ASD about 4 months ago.  I knew at four months old that things weren't quite right but kept getting fobbed off by health visitors, GP, and teachers. (I live in the U.K.) As he was growing up I had no idea about the ASD didn't even Know it existed so he had no specific help only abit of speech and language therapy aged 5 and some extra help in lessons.  My son grew up having to cope with knowing that he was different to the other kids, having to cope with getting told off all the time in school because he couldn't sit still and pay attention and be quiet, not being able to get a long with other kids his age, having his 'best' friend tell him that he didn't want to hang aroung with him anymore because my son embarrassed him.(These are just a few!) He had no idea why all these things were happening and I didn't. Two years ago things got worse and my son just wasn't coping and that's when I started the long trek to get him diagnosed. 

Having that diagnosis has helped me, and most importantly, my son so much.  He doesn't fully understand what he's got but knowing that there is a reason why he is the way he is had made him alot happier. And now he has the diagnosis expectations haven't changed, he just gets alot more help fulfilling those expectations.  I don't use the diagnosis as an excuse for my sons bad behaviour it's just a reason. 

If people ask about my son I do say my son has ADHD and is autistic, it saves going into a long and lengthy discussion about all of his symptoms.  If people want to go into it more then I explain.  I don't see anything wrong in saying he is autistic.(although he has high functioning autism)

I think the main point is while I understand that you don't want a diagnosis for your son, my son was denied a diagnosis for so long and it caused alot of misery for him.

 

[QUOTE=Brent]Pdd is high level asd. Educate people that there are 3 basic types of asd. Severe, moderate,mild. Lots still see asd as a person who is in a corner who does nothing. We need to flyer the environmemnt since the ignorance is out there. Put out the different types of ASD on a flyer.  [/QUOTE]

PDD is not high level ASD.  PDD is a synonym for ASD.

PDD-NOS (what many people mean when they say PDD) is also not high level ASD.  It means a number of different things.  One of those things includes "This person is so severely disabled by something else that they would not be capable of engaging in some of the activities necessary for an autism diagnosis, or they would not be doing certain things even if they were not autistic, so it's hard to tell what's being autistic and what's this other thing."  It can also mean "Autistic but with less extreme signs" or "Autistic but doesn't quite meet the criteria" or "Would be diagnosed with Asperger's except has a speech delay" and such.

It is not a thing with one meaning, it's a catch-all term for people who don't fit any of the other categories for a whole variety of reasons.


And to give a reply that's actually on the topic, I'm autistic, I look autistic, I'm diagnosed with "autistic disorder", and I don't think that looking non-autistic would be an improvement. 

But I do not think that how stereotypically autistic a person looks has any necessary bearing on how that person functions in other areas.  (That is one reason why I do not think looking non-autistic would be an improvement even if I could manage it, which I can't:  It's an enormous drain on energy that would make me less able to function in the world than I am already.)  I have a friend who is like me in most ways related to autism, but she is very good (by the age of 50!  At my age she still was barely starting to consistently talk in sentences!) at passing for non-autistic.  She has all the same difficulties I do but people recognize them less.  She is overestimated and I am underestimated based on our appearances (I look very stereotypically autistic, people do not even expect typing or recognition that they exist out of me).

I just want people to aware of this thead ..... and maybe firefly or another moderator would like to watch this thread now so it doesn't turn into another argument.

http://www.autism-pdd.net/forum/forum_posts.asp?TID=3692& ;KW=horrible+website&TPN=7

Yes it's a long thread, but believe me read through it...

[QUOTE=sallys]

just curious.........for those of you with the kids that are functioning high enough that people don't "see" the autism or don't believe it or whatever, how do you feel when friends/family say something like "If you hadn't told me, I would never have thought that" or "I can't tell they're autistic"  "they don't seem autistic to me" etc. etc.

My dd is hf enough that I hear this a lot. I'm working on recognizing that for being the "GOOD" thing that it is to hear, and not always wanting to respond with "yeah, but it was so much work to get her here"

Just wondering how you generally take those types of comments??

[/QUOTE]

I haven't read this thread, just this first post.

The other day my younger son's nanny asked me "So how is Jake autistic? Because he seems just like any other kid to me."  I thought it was awesome because 6 months ago she never would have been able to say that.  It means that what we're doing is working and in the long term, if Jake can "seem just like any other kid," he can seem just like any other adult, too, and I think that's great for him.
Wow, and here I thought I was just offering commentary like anyone else on the thread.  (sigh)

I'm real.  What I say about myself is real.  I am not here to start an argument.  I would appreciate, however, being treated with the same respect that everyone else here is being treated.  I have not said anything remotely untoward on this thread or any other.  I do not understand why I should need to prove my existence when nobody else here does.

For what it's worth (if this offers any proof of my reality), I was interviewed (using a communication device) for NPR recently on a segment on attitudes towards autism, along with Jim Sinclair, Michael John Carley, and possibly others.  It should be airing within the next week or so, probably on All Things Considered.  I can't give an exact date because the reporter doesn't know yet -- oops, looks like it's tomorrow, so you don't have to wait long, it's right now on the right side of the page about "COMING UP" here:
http://www.npr.org/templates/rundowns/rundown.php?prgId=2

(I was not, however, diagnosed in adulthood, the way that blurb makes it sound.)  Trust me, they would have thrown me out of the studio if I wasn't the person in the photographs, since they asked me questions about the website I made.  I've also, if that's more proof, added a video to the site showing myself typing (and typing one-fingered while looking away from the keyboard at that).

Hopefully that clears that up, and my commentary in this thread can be my commentary in this thread, and nothing more.  I just want to be another user, if I post at all.  Not a subject for debate as to whether I exist or not.  Certainly I don't want to start any arguments just by posting fairly non-inflammatory comments (much less inflammatory than some on this thread, which have been handled gracefully thus far, so I'd appreciate being handled the same, and I'd rather not get into a long discussion of whether I exist or not, so if others don't want one of those, you don't have to create one, I exist).
gtto38893.6883912037And, so that I am actually again posting more answers to things actually in the thread than are elsewhere, I do know a number of autistic people (including family, I'm not the only one in my family) where people routinely claim to see no sign of them being autistic.  I can usually tell though.

It really depends on how they are being told.  I often want to ask, "What do you think 'autistic' looks like?"

I can hear the gaps in my friend's speech while she struggles for words that it took her two decades to learn how to reliably string together in sentences.  I can hear the echoed phrases she uses between the words she's really searching for, and I can hear the words that aren't the words she meant.  I even know what it looks like when she's looking for words but none have come out yet, and get frustrated when people who can't see that, interrupt her in the middle of it.

For that matter, I know her actual personality, whereas other people often get a distorted version that comes from not taking into account the fact that she is autistic.  When she has a meltdown because she needs to say something in two seconds and takes ten seconds normally to find a word, people think she's short-tempered.  When she goes on and on about a favorite subject because she finds it interesting, people think she's a showoff.  When she talks loudly and can't modulate her voice even if she tries, people think she's inconsiderate of others.  I've seen people say horrible things about her based on misinterpretations of her behavior, that would not be there, if they knew why she did those things.  (People are stunned if I even tell them how long it took her to put together spoken sentences.)

So when people say "I had no idea she was autistic," it sometimes rankles.  Especially because they know immediately that I am autistic, and she and I see each other as more alike than different in that regard.  When we tell other people we're more alike than different in that regard, people often think we're kidding, or having them on, or something.  So it always seems like one more way in which they aren't seeing the real person she is, they are seeing only their misinterpretations of things she does that are very autistic in origin.

Of course, if they'd seen her as a child, there would've been no question.  She's almost 50.  There's a difference between 5 and 50, or even 15 and 50.

But it bothers me when people say it of people I know, because it's likely that they are judging both me and the person I know by a standard totally different than we judge each other among ourselves.  Among the people I know, our similarities and differences are divided along different lines, and different priorities, than they are in the non-autistic world.  Hearing others divide us up by the two or three small areas that make us look very different from each other to non-autistic people... it sort of reminds us that they're not paying attention to what we believe really matters about us, but only to a few superficial traits.  And that's why it rankles.
It sounds like your son is doing very well. I can understand your hesitation to label him at this point. Hopefully, the program will continue to help him and he'll continue to progress. I'm very glad that you're so involved in your son's treatment(wish my husband was). I agree with trying to focus on the positive and watching the type of wording you use around your children in regards to their treatments.Gasp!! Thanks for the explanation! Now I am more confused as ever! I think the only thing I understand is that you think your child is Autistic but you want to choose the label for your child. Look, my daughter had really severe symptoms at two and has very few now! Does that mean she is not Autistic-No it means that therapy and early intervention has really helped her. What kid cares what is in their medical file? You should be hopeful but also realistic. Denial sometimes blinds us all. Yes ,have hope! We all do. The label of Autism really does not hurt me or my daughter. It actually helps us to face her problems with our eyes wide open! I hope your son makes good progress. At least he is getting help!

Fatherof2 I just wanted to say that I in no way wanted to diminish what you were saying or feeling ... I didn't intend that at all, although it migh to seemed like it. 

I am glad that you as a father are so very involved with what is going on with your son... some mothers on here don't have that.  

Please stay informed and keep watching things.  Good luck with the progression those are all great things you said about what He's moved on from.

I have had a few family members who only see my son every other year or so comment on how "normal" he seems.  They usually only see him when he's on his best behavior, though. "Most people here understand what PDD means and Autism. Most people
know the difference if any at all."

That is certainly not true. Remember, I am not talking about you guys.
You are far more educated that the general population because you're
having to deal with it. Most people do not know anything about autism
outside of the popular notions of Autistic Disorder itself. Nobody knows
anything of the term "Austic Spectrum" unless they have children that
have been investigated for it. That is why I do prefer the term PDD over
"Austic Spectrum" because of what the word "autism" communicates to
those who are not familiar with any "spectrum." Again, this is a matter of
language and communication.

Posting on a board like this is problematic because everyone here has
different cases and experiences. A child who has been diagnosed with
Austic Disorder is well outside the point I am making, and I would feel as
strongly as you do that if symptoms are that apparent that a diagnosis is
absolutely necessary. I am specifically taking a firm stand on children who
are delayed in areas that might be considered PDD, and I am not going to
be so quick to say such children have "disabilities" because I recognize
the cultural context of such wording. That has nothing to do with "more
specialists," this is called paradigm shifting. If you study culture and
cultural history you will see it a lot in areas of religion, politics and
science.

"Although I can understand why you don't want to label your son....If He
is on the spectrum, you are only doing Him a disservice by not."

I would be doing him a disservice if he stops improving, cannot function
correctly in a school environment or has learning impairments that
appear related to this issue, and after all that I refuse a diagnosis that
would allow him treatment for those things. Yes, that would be a
disservice. It would also be denial on my part. Though some people in
this program may see my reaction as denial, that's because they have to
deal with it a lot and they don't know me well enough. I have lots of
anxiety -- my habits are actually opposite denial. I have a tendancy to
worry about problems that don't exist, not deny problems that do.
Dealing with that has trained me to become very rational and logical
when it comes to evaluating problems in life.

In my view it would also be a disservice to allow the system to diagnose
him officially before he has a chance to show enough improvement,
especially while he gets along well in school, plays well with other
children, has no temper tantrums, loves to be cuddled and touched,
makes good eye contact, has lots of imaginary play, etc. by the time he is
3. Because the diagnosis would stick in his medical history for life,
despite that he has begun to function as any other normal child. That
would be a disservice because it would erode how he feels about himself
in society, when he naturally begins to compare himself with other kids
and becomes self-aware enough of his place in the world. As a parent, I
have to balance these two things, and I am going to step very carefully. A
provisional diagnosis is not a permanent medical record but allows him to
continue getting more intensive treatment by Early Childhood
Intervention, and I see this as a good thing, which is where I'm at right
now.

My cautionary message is to protect your child's feelings of self-worth
and normalcy at all costs, but without denying the services you can get
for him at the same time. So if you have to -- or already have -- had your
son or daughter diagnosed, try to use constructive language around him.
He or she is unique, is special, is loved, and has the priviledge of getting
one-on-one attention other kids don't get. I would avoid using words
around your child like "disorder," "problem," "delay," and "autism" -- even
if your child has been diagnosed with Austic Disorder itself. (PDD-NOS
and Autistic Disorders are two different diagnoses, regardless that they
are categorized together by the DSM-IV as both being a PDD. I would
avoid the label "Austic Spectrum" because it just confuses the issue and
invites the wrong understanding from people "on the outside" and
possibly from your own child.)

At 2 years, 5 months, if I call my son's name, he looks up at me and
makes eye contact. Often he comes into my home office and asks me
questions, looking into my eyes and babbling -- but within that babble
are a few sentences that I understand, and the babbling is decreasing. He
initiates communication with me a lot, and often asks me to play with
him. He is very expressive -- not deadpan -- and does not laugh or cry at
inappropriate times. He had a few temper tantrums about 6 months ago
that were nasty (throwing himself on the floor and screaming when he
didn't get his way) but don't see these as being outside the context of a
normal 2 year old, and I've seen other 2 year olds with far worse temper
tantrums when I'm out in public. In fact if he has a tantrum now it's not
even as bad as it was then, and it's not frequent. Mostly he gets upset
that his mommy won't let him watch his favorite show, so he pounds on
my recliner and makes a screeching sound that reminds me of a cross
between a Raptor from Jurassic Park and one of those creatures from
Alien.

He used to spin wheels a lot. He also used to play with his Mommy's hair
for hours on-end. Not anymore. (I don't think Early Childhood
Intervention had much to do with this. He was already moving out of
those habits by the time they started seeing him.)

The only thing that really bothered me last year was he would sometimes
slap himself in the face (in a joyful way), or slap me in the face, and
sometimes flicker his fingers in front of his eyes. Those things, plus the
language delay, are what prompted me to call Early Childhood
Intervention, because I felt that were not normal. However, by the time
they started seeing him, both the fingers and the slapping had stopped.

What continues to attract their interest is the fact that he doesn't always
look up at you when you call his name. Sometimes he focuses on
whatever he is playing with and won't acknowledge you. I always saw this
as the same trait that I have, and my dad has. I can't concentrate on more
than one thing at the same time, so I have to block stuff out. I hear you,
but I'm not ready to give you my attention until I'm finished with what I'm
doing. In fact if I am interrupted I can become very irritated. My dad does
this all the time, and he's not autistic by any shake of the imagination.

My son did this more when he turned 2 but not to the extremes that I
myself have seen among children with Austistic Disorder. (I grew up
around kids with special problems because of my half-sister, so I have
seen many. Also my mother was a public elementary school teacher for
years, with an MA in education, and we study my son quite carefully
together. She agrees with my caution and my logic.)

My son is getting a lot better about making eye contact. Better than me
actually -- I tend to avoid eye contact as a bad habit -- something I've
done all my life. (That is an anxiety related issue I think.)

He has an awkward running posture also. He doesn't tip-toe like some
do, but he is flat-footed (like me) and runs with a comical trotting pattern
with his arms flapping around. I thought it looked cute myself, but it's
something that the program wants to work with him on.

He tends to have a lack of curiosity about his environment, at least to the
degree that he doesn't really go through his toy box and dig stuff out. He
has a few favorite toys and he sticks with them if they are out in his
favorite playing area. In a way this was very helpful as parents because he
would not go up to electrical sockets and stick things in them (I had them
covered anyway) or discover my library and rip my books apart. But I
would like him to be more exploratory. Over the last few months he's
taken up lining toys in rows, which I thought was interesting until the
specialists told me not to let him do that. (I had actually encouraged him
to do that originally, I may have started that habit. I didn't know it was
considered a sign of PDD, at least in context with the other traits.) Early
Childhood Intervention spends a lot of their time encouraging him to
invent imaginary games with these toys, giving them function rather than
just watching them move back and forth, and I approve of this work. But
even outside of their coaching I would spy on him playing with his stuffed
animals, and they would talk to one another and do things.

I am also concerned about his obsessive compulsive habits. If we go out,
he demands to wear a jacket. Even when we tell him its hot. Today he
didn't even ask for it when I took him out, which is a good sign. But
sometimes he just likes things "a certain way." He likes a certain ritual
pattern or he gets uptight. On Father's Day we took him to a fair, and he
enjoyed himself but was a little shell shocked. I, myself, am abnormally
unsocial, and I do not like crowds and chaos, so I feel he is doing a lot
better than me. On the drive, my wife took off her shoes while sitting next
to him in the back seat. He got uptight and demanded that she put her
shoes back on. These are the kinds of things I want to improve in him.

I can see obsessive-compulsive tendances running to me through my
mother through her father. Her father -- my grandfather -- gets very
uptight with ANYONE who does not eat breakfast. I mean he acts
ashamed of them! God forbid you don't eat a wholesome breakfast
around my grandfather. He also gets very disgruntled if you say you're
going to be somewhere at a certain time and you are five minutes late.
You have to be on time, you just have to be. But my grandfather is a self-
made millionaire, and a former CBS executive officer, having retired after
56 years with the company. He was the most powerful union contract
negiator in the entertainment industry. Not autistic, certainly not!
Anxieties are the problem here.

So as you can see, my son has some issues, but I am hopeful, and I'm
quite confident in my current decisions. I wouldn't be at all surprised if
my son's habits resolve into anxiety challenges like what I have.
Generalized Anxiety Disorder has traits that are shared with many of the
PDD behaviors, as well as OCD. Fortunately I'll know a lot more of what to
look out for on the next run. My wife is due in 1 month with our second
boy.

I am responding to the original questions although I share some of "Father of Two"s perspective.  My 2.9 ds has mild pdd-nos and is progressing nicely.  Will he lose his dx with continued therapy as his dev ped told us he might?  Naturally, we would be thrilled, but we are not banking on it.  Basically, we've decided that ds is young enough and we are still dealing with this ourselves that we are selective in who we tell and what we tell them so that we don't stigmatize ds and we don't have to answer those endless questions and deal with those comments that imply that we are overanalyzing our child because Einstein or the girl across the street talked when she was 5.

For instance, for my parents who think ds is "a little immature - but there's nothing wrong with him!", we let them think so.  There's always stime to tell them if it becomes very obvious.  For friends who visited last Saturday and ds seemed fine (he even played with their 9-yr-old son and seemed so typical - I posted about this), we said nothing.  For the hairdresser who tried to cut his hair on Saturday morning while he absolutely freaked, I whispered that he had some delays.  One day at the park a few months ago he was screaming because he wanted to be on a swing and there were none available and one dad was pushing his son in the swing and looking at us like we were nuts, I said, he has mild autism and needs the swing (at which point the dad took his son off the swing and let us on it and I thanked him through my eyes that were welling up with tears). 

We have a few friends who know the whole situation so that I can talk about how things are going and benefit from their support.  But, at this point, dh & I feel that full disclosure would not benefit us or ds.

 

Hi, I am commenting on the original post.  My DS On some days (20% of days?) you can definately tell something is very different about him, such as moving his head or body about in a unusual way or sounding/acting drunk or tired, poor concentration. This may last an hour or several days.

On some days almost no signs at all all day.  On these days he is very alert, inforimitive, he has smooth conversations that are releative. (about 30% of days) But most days he is fairly positive and can almost seem n/t but the ASD shines through here and there .  The kids he goes to school with can tell because they see him everyday and at some point most days he has several quirks - humming, tapping, getting up when everyone remains seated, getting to loud,  etc. but if you just saw him durring the day for a few hours he may seem like anyone else (depending on the day.)

I'm going to jump in here also...dd was dx with PDDNOS and it DOES INDEED fall under the umbrella of ASD's.  We use the word and now our family and friends are more aware.  I can understand that you don't want a label for your son, unfortunately most children dx don't simply outgrow it; yes, with therapy they may appear more "normal" to others, but and there are so many buts.

As has been said on our board before "once you've seen/met a child with autism, you seen/met ONE child with autism"....they are all different.

It does seem that some peope are to quick to say that there children are AUTISTIC. it is much easier to say that than explain to some one who doesnt understand that your child has sensory issues or developement delay. When i say K has been dxd as having Autism im very quick to say, but mainly its sensory issues and he's very inflexible, because compared to DS#3 he is 'Normal' maybe people think he's a brat, maybe they think im a bad parent? do you know what, let them stare when he has a meltdown, one women said to me ooh if he were mine id slap his Ar$e. i explained to her  that my son has a condition, that means he cantbe as flexible as others and has sensoryissues, and that he wasnt been a brat he was just struggling to walk past the BRIGHT yellow newspaper stand in the shop (its not normally empty as on this occassion). and thats what was upsetting him. Ididnt yell at him (or her) i just waited out calmly and talked to him in a reassuring voice. then asked her if she STILL thought i should slap him? i think she was pretty close to tears of embarresment.

 but K gets so much help in school and we get so much help as a family, that is the important thing here, call my kids AUTISTIC, PDD, ASD, or yellow spotted penguin as long as they get EVERYTHING they need to help them and the services that they require to help them enjoy life and get the most out of their education.

and yes  compared to ds#3 i feel a fraud when i tell people Ds#5 is on the ASD but those people dont have to wash there hands a certain way, cook a certain way, eat certain foods, avoid noise, avoid smells and avoid MELTDOWNS!

Anyway let them think what they want as long as we do the best for them and they are happy loved and cared for you can call em what you what you want!

                                                                                                           

I just want to first reply to sally's ....I respond like others... yeah He sure is doing great... although I will admit... now as Zach approaches 4 (in a month) Him being Autistic is much more apparent.  

Fatherof2 ... Let me just give you a lil' bit of perspective.  My son will be 4 at the end of July.  He has been in Early Intervention therapy since He was 2 and when all of this started I lived in complete and utter denial about my son.  I have close friends who have children on the Spectrum and every so often someone would mention Autism.  My mother, my Aunt (who works with children) and my Grandmother.   Every time someone said it I said No way... He just needs more time.  See my son had been in the hospitol when He was 6 months old for 3 months.   So I assumed He just needed time to catch up. 

Make a long story short.... my son was officially diagnosed in May of 2005 with severe autistic disorder.   That's right SEVERE.  Everyone... EVERYONE wherever we go thinks my son is normal, just shy.   But I know the difference.  My son doesn't talk... He echo's (which is better than where He was - non-verbal).  My son NEVER, not ever had bad behavioral problems... I mean yes occasional tantrums and such... but now He is VIOLENT.  He hits us and kicks us and pushes his sister.... for apparently no reason.  My son knows all his colors, numbers 1-10 (and some beyond), He knows all his animals and thier sounds, my son can remember most any song he hears, and He can keep a beat like no one's buisness.  Through hard work and determination He is progressing.... HOWEVER.... there are some things that become more apparent with each new progress... His sensory issues, His behavioral problems.   When we first started thinking About him having and autism SPECTRUM disorder ... we were for sure it was PDD-NOS (in fact there is a post on here by me from that time that will attest to the fact).

So let me give you a lil' advice .... Although I can understand why you don't want to label your son....If He is on the spectrum, you are only doing Him a disservice by not.  If He doesn't have the DX He can't get an IEP for school which YOU don't know.... He might need it... I pray to God He doesn't. 

I am glad your son is doing well right now and I hope this progression continues...

Pdd is high level asd. Educate people that there are 3 basic types of asd. Severe, moderate,mild. Lots still see asd as a person who is in a corner who does nothing. We need to flyer the environmemnt since the ignorance is out there. Put out the different types of ASD on a flyer.  Fatheroftwo - I can totally see where you're coming from! The thing about ASDs is that there is such a wide range of severity. Since your son appears to be on the very mild end -it's understandable that you might not want a label for him, as it appears he may function and do well without one. He may be one of the lucky ones that seem to overcome many of their difficulties and are able to "pass" or appear typical. Thank goodness for that. However, many children have far more difficulty with that, and it tends to become more obvious with age. I hope that your son continues to do very well, and does not require a diagnosis. But, understand that for some parents - not seeking a diagnosis (to gain access to needed services and support) is not a luxury that they have. My son seems to be a very borderline case if any. Since he's currently receiving services that address his issues at this point, I'm not in a rush to label him. However, I do plan to seek a diagnosis in the future as I believe he'll need it to get the services he needs. He, unfortunately, does not do well with other children his age as he does not interact with them (if he does it only becomes aggressive), so once he begins preschool, we'll have a bunch more issues crop up which will need to be addressed. So, basically, I guess I'm saying that while I understand what you're saying, I think you have to realize that not everyone is in that postition.I am concerned by the way the word "Autism" is being thrown around
here. Everyone needs to remember: this is a word that has ballooned in
the medical community over the last several decades. Children only thirty
years ago who spoke late, lined objects up on the floor, spun a few
wheels, and were otherwise fairly normal children were seen as fairly
normal children. Today, they are investigated for having disorders. What
has changed? Our paradigm. Every child has a different set of personality
traits, and some of them are less social than others. It is only within the
context of our modern cultural paradigm that these traits are now
encompassed as a group by something referred to as a disorder.

More specifically I think you need to be careful about how you use the
word autism unless your child has been diagnosed with Autistic Disorder.
In other words, if your child has been diagnosed with Pervasive
Development Disorder Not Otherwise Specified (PDD-NOS), he does not
have Autistic Disorder, and therefore should not referred to as autistic. In
fact, you shouldn't use the word "autistic" in any fashion in that case. You
shouldn't say, "He's high-level autistic," or "He is partially autistic," or
anything like that. This is a matter of communication with people outside
pediatrics and neurology. When people hear the word "autistic" they
imagine Rain Man. They look at your kid, who may be diagnosed with
"PDD-NOS," and they do not see Rain Man. They are not in denial for
goodness sake! They are correct. The fact that the treatment for PDD-
NOS is similar to treatment for Autistic Disorder, and that some traits are
shared, is completely irrelevant.

Look at it this way... Allergies (such as an allergy to peanuts or ragweed
or what ever) and AIDS (acquired immune deficiency syndrome) are both
Immune System Disorders. Immune System Disorders include Allergies,
Autoimmune Diseases, Immune Complex Diseases, Immunodeficiency
Diseases, etc. The spectrum of immune disorders is very wide,
encompassing immune under-reactions to immune over-reactions, from
acquired immune disorders to inherited immune disorders. But they share
a common trait: failure of the immune system to act properly. But if
you're allergic to season pollen you're not going to say that you have an
immune disorder, are you? That would conjure up far more sinister
images in the minds of your listener.

The word "Autism" is very familiar to the public as being something that
describes a child who almost never communicates, who rocks, who
doesn't like being touched, who stares up at lights or at objects and does
not make eye contact, and who may have savant characteristics. If your
child has been diagnosed with "PDD-NOS" you're probably not seeing
most of these characteristics, and certainly not to the extremes as a child
with Autistic Disorder.

You're better off simply explaining to your closest family and friends that
your child has a form of PDD, simply described as a set of developmental
issues that are seen as delays when compared to the average population,
and are therefore being treated to adjust the child for a much easier fit in
our society.

My son has not yet been officially diagnosed with PDD. He has exhibited
about half the traits of what would be probably considered PDD-NOS, and
about a quarter of those have disappeared. He is now 2 yrs 5 months, and
Early Childhood Intervention is working with him every week since he was
2 years old. Nobody else in my family has ever been diagnosed with such
a problem (but that may be because PDD was not diagnosed in my
generation or earlier), though I have problems with Generalized Anxiety
Disorder (not diagnosed), as does my mother, and probably her father.
Additionally I have mild Attention Deficit issues (not Hyperactive), as does
my mother, and probably her mother - though I am not sure. None of
these things have ever been diagnosed, but introspective and honest
enough to solidly recognize the possibility. Since PDD includes traits
commonly also known as obsessive-compulsive disorder, something that
also stems from anxiety, it doesn't surprise me at all that the itemization
of PDD as it pertains to my son is a grouping of inherited traits from
anxiety and non-hyperactive attention deficit issues.

The Early Childhood Intervention people are concerned enough to
recommend that I take my son to a neurologist to have him officially
diagnosed. I have decided not to do that yet. There are several reasons
for this. 1) he was not an extreme case for PDD to begin with, but based
on my understand of PDD, he was certainly a case for it 6 months ago. He
has given up many of those behaviors. His speech has been delayed so
that he was at the 18-month level (compared to the "norm") at 2 years.
He would only say about a handful of words, despite that he could
understand a large amount of language in both English and Chinese (we
are a bilingual household). He now says more words than I can count,
using 3-6 word sentences. So as long as we are seeing such
improvement, what is their to gain from an official diagnosis? 2) an
official diagnosis by a neurologist will stick with him for the rest of his
life. Let me explain why this is a concern:

As a parent, I feel it is necessary to make sure he gets the boost he needs
to cooperate in our social world and survive in a competitive atmosphere.
That may mean getting him professional training on the one hand (like
Early Childhood Intervention), and protecting his self-esteem on the
other. It's a balancing act. At 2 years old I don't have to worry much about
him understanding that he has "special training" right now, or might have
a "disorder," however at an older age, especially in a public school, if he is
placed into classes with more severe children this might not be helpful
for him at all.

My half-sister is mentally handicapped due to placenta abruptio upon
birth. Lack of oxygen in the moments before she was delivered caused
brain damage, and therefore she was seen as retarded. She was
diagnosed with retardation in the late 60's or early 70's despite that her
IQ was higher than all of the other children with that diagnosis. However
it was too low to be considered normal. So the system diagnosed her and
she was placed into classes with much more severe children. This was
extremely detrimental to her growth, and permanently damaged her self-
esteem and her identity. She came to identify herself that way, and no
longer has any confidence at all. Some people who talk to her now don't
see any mental problems until they spend a little time with her.

Once my son were to become old enough to believe he is being
categorized with children that have Autism (which may be earlier than you
think -- kids aren't stupid!), this could adversely affect his identity and
self-esteem. He may not see himself as being normal, but something less
than that! And that would be tragic, because it's just not true.

So I can't say this enough, be very careful about what your child thinks of
himself or herself. Don't slap labels on them where their ears can hear.
They will carry this into adulthood and it will not be constructive.

I am going to be very cautious about allowing my son to be officially
diagnosed unless I feel he is not improving and cannot adjust in a
preschool environment. So far he has not had any problems interacting
with other children at his daycare (All About Learning, which is far more
scholastic than most daycares), except that he is a little shy and does not
play with the other children quite as much as they play with each other.
He makes very good eye contact when you talk to him, and will initiate
communication with others when he's having fun.

For now, in order to receive extended services from Early Childhood
Intervention, I am allowing a provisional diagnoses of PDD. This means
that he has not been seen by a neurologist so he does not have an official
diagnosis, and therefore the provisional diagnosis can be removed from
his record at a later date. But it allows more intensive and extended
attention from the Early Childhood Intervention people, and since I have
seen very positive results, I want that to continue. An official diagnosis
sticks with him for life. It cannot be removed from his medical history.
This could cause unforeseen problems. For instance, supposing I were to
try to get him into some private schools later in life for which he might
qualify unless he has a medical record of PDD. As long as I can see he is
functioning well with other children and learns at the same rate as a
normal child in a classroom environment there is no cause for an official
diagnosis. I will re-evaluate again after his first semester at preschool this
fall, and upon his turning 3. Father of two, I totally disagree with what was said in your post. What has changed in our society is that there are more specialist, and more awareness for Autism which = more ASD diagnosed. One person does not have to have all the criteria for ASD to be dxed ASD. This is why it is called Autism SPECTRUM Disorder!!! Most people here understand what PDD means and Autism. Most people know the difference if any at all. I know many children with PDD that rock and line objects up! These disorders are very similar to some families.I encourage you to learn more about the spectrum.

 

I'm another one that disagree's with the post. I was told by the Psychiatrist (with 25 years experience with ASD) that PDDNOS is on the AUTISM SPECTRUM. ASD is AUTISM SPECTRUM DISORDER.

I think that what happened with your 1/2 sister is very unfortunate and I'm sorry that happened. But I do think its an overgeneralization when you try to prevent a dx that is helpful and that gives people information.

For my son he has so many dx due to his chromosome deletion it doesn't really matter anyway---the labels are his and in his record. I am one that thinks knowledge is power. I don't consider my son's PDDNOS to be shameful or something that people will look down on him for (except for those that are ignorant). For us as a family it has explained a lot. When he gets older and canunderstand better I fully intend to share it with him and help him to understand what is happening. I don't want him to feel like there is something wrong with him without giving him the tools to help to understand why he is the way he is. Ignorance never goes far as an intervention.

 

I'm in the middle!  I have found that each dx means different things, depending on where you are!  One place told us my son had PDD, then next ASD. 

To me what the label is doesn't matter... it's how we celebrate it's uniqueness.  How it is a part of us and how it shapes us.  How we can enjoy and honor each part of ourselves, autism included... how many ppl get to view life with the point of view it brings??

Pan

I think that an official dx can do many positive things. For one it validates the parents. How many months have I gone back and forth  he's o.k. its just me  no there's something very wrong  no i must just be a worry wart  etc etc. and more importantly it helps your child get the help they need. I'm glad your son is doing so well. We have had early intervention for about a year now and mine is slipping. The more that people are willing to attach the A word to the faces  the more the average person will be able to understand and the stigmas will dissapear. 2nd round mom38888.2797222222Father of two, hope that you are not offended from my post. I only felt as though coming on an AUTISM/PDD forum and telling people that the word Autism was being thrown around was a little harsh. I just wanted to let you know I was afraid that you may have hurt others feelings especially new people here that may not yet understand all the info.This is where many new parents come for support as well as information. It is ok to disagree here,we all have very different situations and points. I hope others do not take it too harshly. Good Luck to you and your family!

[QUOTE=Brent]Pdd is high level asd.  [/QUOTE]

Sorry, not so.  PDD and ASD are both terms for Autism Spectrum Disorders.

Fatherof2 is correct that "autism" is not PDD.  It is a specific category of PDD.  PDD-NOS means that a child does display some, but not all of the qualifying behaviors to be diagnosed "autistic." And yes, the term "autism" is thrown around a lot, so most people are rightly confused when a parent refers to his child as such.  

FatherofTwo...I'm not sure you had a question here at all...it seems to me it's more of a fear of the word "Autism" or the label.  Simple knowledge about it should quell your fears. (who care what other people think? You could educate them)  PPD is the name of the umbrella, Autism (at any level) falls under that, as does PDD-NOS.  The symptoms are like throughout, different levels of severity or a different matching of symptoms.

When you said your sister had an IQ of 95 - which actually is average (90-109) so maybe it's in the lower percentile of average - my main point is it doesn't really matter...someone should have told her that all along.  IQ testing doesn't make sense for most children with sensory issues etc. anyway...their processing is different than the rest of us, and if tests aren't tailored to people's learning styles, well, they're not going to get realistic results.

I understand your concern, really I do...the stigma of a "label" and all that.. but as has been pointed out, as long as services are provided for ANY child that needs assistance, that's the most important goal for any parent.  When your child is in school, and can't concentrate because there's too much movement, too many lights, too many distractions on the wall, needs constant repetitive instructions, THAT'S when this "label" comes into play.  If you don't have a "need" (ie, dx - or qualifying classification) you won't get the service...that's the way schools operate.  You can tell them all you want, "well, it's just sensory issues he needs help with" but they will not help, because that is not a justifiable need for services (we had only a DSI and Speech dx for 6 years - services were a constant battle).

Bottom line, my son knows I love him, wouldn't trade him for the world.  I don't talk about him or any of my children like they are cattle or stock quotes - they are people...they are no less nor more worthy of love and attention based on any disability they do or don't have.  I think that's the point you were trying to make...and luckily, I don't believe a soul on this board thinks any differently about their child. 

What is remarkable though, is that you do seem to be very intuned to your son and his abilities...and that's really the best gift you could give him.  Everyone struggling with "trying to find the real issue" has your post as an internal conversation - I thinks it's part of the process - you have a leg up because you are aware.  Go from there.  Your son is not even 3 yet...the progress we made since age 3 is quite remarkable, revel in every accomplishment, and whatever the "label" turns out to be, so be it.  Our children still aren't defined by a diagnosis...it offers only an insight to their personality.  (FYI - my son may have received far more beneficial therapies if we had gone through more extensive evals early on....as it is, he's doing well, and we just have to deal with what we missed out on).

Wishing you continued success.

"Now I am more confused as ever! I think the only thing I understand is
that you think your child is Autistic but you want to choose the label for
your child."

No, it's the opposite. Sorry I write long-winded posts. I'm a novel
writer. :-/

In short: Early Childhood Intervention told me last week that they do not
think my son has Austic Disorder. They think he may have PDD, but it
would be a different diagnosis under PDD, probably PDD-NOS which is a
catch-all for a series of developmentally delayed children, many of whom
behave different from one another but which the DSM-IV manual groups
as PDD-NOS. I do not want my son diagnosed with any form of PDD by a
neurologist unless he no longer improves with the special services he is
already getting -- because what would be the point? It wouldn't change
the rate at which he is getting services at this time.

I am trying to communicate that I do not like the term "Autistic Spectrum"
because it gets confused with a diagnosis of "Autistic Disorder." Those
refer to different things. Maybe this site will clear that up:

http://www.autism-society.org/site/PageServer?pagename=PDD

"What kid cares what is in their medical file?"

My half-sister has an IQ of 95 (below average) and she cared a great deal
about it by the time she was 20. That is not because she knew anything
about a medical file, but because the medical file associated her with
much more severe cases, and therefore she associated herself with severe
retardation and began to mimic them.

PDD children, on the average, have higher IQ's than other children, so I
hear. So they will realize very early that something isn't right when they
are sitting in a doctor's office and hear the word "autism" crossing back
and forth and they bring the word to school. Or when they find
themselves in a camp or class or some other situation in which more
severe children, or children who didn't get the same treatment, are
present, and they come to associate themselves with that level of severity.
Don't underestimate your child! She's a lot smarter than you think she is.

"You should be hopeful but also realistic. Denial sometimes blinds us all."

I am being quite realistic. What do you think I'm denying?
 

Copyright Autism-PDD.net