Apparently my DS doesn’t have Autism | Autism PDD

If I hear one more person say my DS is fine I really will scream! We went on vacation w/ my best friend and her kids and had a blast. My BF has only seen my DS for a few days at a time a total of 5 times in the past 3 years. He was great on vacation, playing with her son, who is also his best friend. They are the same age and her boy is such a sweetheart and tolerates my sons "quirks". The boys played and ran and swam to exaustion. I have to admit, I saw very few of his autistic behaviors on vacation. I was afraid it would be a disaster because of routine changes. A few meltdowns, a bit of rigidity and his stims he does with his blanket when he is sitting still.

My friend swears he isnt Autistic, cant see any of his motor deficits or sensory problems. Though we talk every week on the phone and Iv told her of his rigidity to routines, meltdowns etc. she thinks all kids have those problems. I guess the doctors, speech therapists and sensory intregration therapist are all just crazy.

Lots of friends tell me he is fine, they dont "see" he is autistic. I told them he is mild, not what they are thinking which is probably a sweet little boy in a corner looking at his hands and wiggling his fingers for hours.

I know I should let it drop, just ignore the comments and continue helping my son. It just infuriates me that they think I am making this up or he is just playing me to get spoiled etc. I have a lot more to worry about with five kids, always lots to do, I dont need to make things up to do or to worry about. Geezze!!!!

p.s-your boy is to cute!!!!

My mom has the same problem. Whenever I mention autism, she tends to ignore it or ask questions like, So what? She has also told me that there is nothing wrong with him and that he will be just fine. YES. He will be just fine, but that doesn't mean that I must be naive about his developmental delays.

Oh yes I get this as well,at daycare he can be so great,family visits Perfection.

Linda

The best way to get a doubter to change his or her mind is to have them babysit -- alone -- with your child. Of course, you might not trust the person to do that. But if the person is someone not close enough for you to trust with your child, why do you care what they think? If it's someone close, like grandma or auntie or brother-in-law, arrange for them to spend an afternoon (or even an hour) alone with your child. They will sing a different tune.

I second Tzoya's motion...

And I wanted to add that my professional colleagues (docs) said for a few years that he seemed fine to them...They were concerned, but some said they didn't think he had it...

yeah I get this all the time. except when out at functions. then we get stares. wish my friends could see my kids then!
moderngnome39270.9202893519My son has always been extra great when someone is babysitting. But then---there was a few years where my parents couldn't watch him. They are getting too old. Now--and since he is better--he would do great. Just give him 1 on 1 time and do what he wants to---everyones happy!yeah i get the "really he has autism, i would have never known". well yeah,
he is thankfully on the mild side of the spectrum and you spend like what
10 minutes with him.

i just let it go, at least he looks "normal" for a few moments in time!

LI also get this alot- My son has mild PDD-NOS and he does alot of hand and
finger flapping but mostly when he is excited or relaxed and when he is
around people he doesn't know that well he just seems shy but "normal" I
also think when people hear AUTISM they think RAINMAN and that there is
so many diffrent symptoms for each child that alot of people just do not
understand.

I'm with Fred. Sometimes people want you to feel better emotionally and to have high hopes, so they focus on the positive. When Cole was little, I'd hear "oh, he'll be just fine...or he is perfectly normal" constantly.

If this is your Best friend, tell her you know she doesn't mean to, but she is inadvertantly trivializing and minimizing a very, very important subject. She needs to stop it because it really hurts your feelings.

Whip out the number of MDs, PhDs, speech therapists, etc who all agree your kid is on the spectrum. And then say, hey - all 8 of them could be wrong and you could be correct, but a little extra therapy will just make him smarter in high school if nothing else.

And finally, this is a GOOD problem to have for an autistic family! That your child has times of showing very few obvious symptoms is marvelous. I envy you this particular problem!

Sometimes I think certain people say things like this because they think we are looking for an excuse for our children's in-appropriate behavior. Like autism is just an excuse for why your child perserveres over the computer or why your child does not play outside like other children do. This is something I often battle with. It's like they think that I don't have any concerns about his lack of desire to engage with the world. I constantly worry about this. However, I do know that you can't just make your child go outside and play and know that he is riveted with fears and uncomfortable with this environment. And you know, truthfully, when I hear myself explain to other people that he won't go outside to play and that when I force him to he can only handle a few short munites at a time, I have to admit if I did not know as much as I do about autism, I would probably feel like these were just excuses. There is just such an unawareness about autism. At the same time, because my child has autism does not mean that I want people to feel sorry for us or have pity. I do not look at autism atleast in my sons case as so much of a disability-except where the world is concerned and you have to make special arrangements for education and such. He is what I feel to be a normal, healthy child who happens to think differently and so we approach his teaching and handling in a different manner. Of course my son is mild and so I can only speak for myself. But, I don't feel this sense of doom and great worry for the future. I of course, am concerned just as I am for my daughter about their future. I know that whatever the case he is my son and I will handle whatever lies ahead. And just as much as I get bothered by people who don't think anything is wrong with him, I also don't like people to label him "disabled" so to speak. It is so hard dealing with the world about what you feel are personal issues and yet sometimes we just have to and the world is a judgemental place.I get that too and instead of letting them in on all the ways of which she is still autistic I just smile and tell them she has had lots of work and still in progress..I feel better and they have to wonder:)When my son was little, I got this a lot. However, the difference became more and more apparent as he aged. Now, at age 16, people may not know what he has is Autism, but they certainly know "something is wrong with that boy." It's sad that that is a fact. But it at least relieves me of doubters. Those of you who still have doubters at least get to enjoy the fact that your children are close enough to NT to "pass."

Mamaoffive,

Don't worry so much about other people. I want to sign my son up for a Talking Books program through our state library and I am getting c**p from his support staff because my son can read but he chooses not to when given the choice so I thought maybe in the car etc. it would spark some interest for him. So I am doing it anyway!! Listen to your gut and your "mother instincts." It always works for me.

By the way. Is that blueberries?

Personally, I appreciate these comments for reasons tzoya mentions, but that's just me :)

Oh yeah I think we all get that, for instance my Aunt has seen my son like 4 times within the last couple of years and I mentioned to her that he has mild PDD and of course her response was "I don't think he is" I was like whatever I know my son more than anyone and I'm going to do what I've got to do to help him suceed in every way. But yeah it gets very annoying to hear people who don't know my son make such comments!I hate that! I know alot of people try to make me feel better and say things like he'll be fine, or he'll catch up. I know they are either not educated (I try to enlighten them) or just trying to be nice. I just don't feel validated ( I hate the word validated but it works in this situation). They just don't understand. Or people really are in denial, a person I know finally had her 7 yo dx with aspergers. It was really obvious that something was up with this boy and everyone including the school just said oh he's fine, just spirited or gifted or whatever. He missed so much intervention time.

I don't mind the " he seems fine" "he doesn't look autistic to me" comments. Its the " he doesn't need EI or therapy" or the " let him be a boy" "my kids do the exact same things. Its kids being kids" when the kids are nothing like ds, are the ones that drive me up the wall.

I get this alot from people especially from our neighbor. Since my sons been talking better latley he thinks theres nothing wrong with him he was just a late talker. I think he needs to research PDD alittle more its not just late talking.The more time my family spends with my son, the more they understand. It's that simple. Especially in varied settings such as restaurants, parties, and especially the grocery store. They can see how he shuts down and tries to block everything out by focusing on something that interests him. In fact, my parents used to babysit him a couple of years ago, but now that he's diagnosed and time has gone by, his symptoms are more apparent and no one has offered. They have seen how difficult it is for me ona daily basis.I get that too. Mainly from family and that is because they think ALL autistic kids bang their heads or have some kind of self injurous behavior. And they too have seen the kids like 3 times in their lives. So, I just smile and say maybe who knows and keep plugging on doing what needs to be done.It can be frustrating. We got that about 6-12 mos ago, a bit, from family
& neighbors. But, over time, they've seen her in various settings et al &
have seen her behaviors & meltdowns. Don't hear many comments
anymore. I think the root of those comments was kindness & trying to
make us feel better. Also, to some extent, how the public envisions
'autism' can be much different than how most of our children are--so
that may also be part of it.

I will also add--we just had our vacation too & dd did incredible. We had
some usual meltdowns & issues, but I really thought she may derail being
off schedule & all. There were chunks of time, a few hours would go by,
& no one would think anything aside from speech issues for dd. That's all
part of it, the uncertainty & inconsistency of PDD.

If it is to where it's affecting your relationship w/ your friend, perhaps
email her some info on PDD (something that really explains the spectrum,
the issues, etc.). And, you may say something like "yes, it's amazing how
well-behaved he can be, and then other times when he is _________
(screaming for hours, pacing, etc.), it all becomes so real (PDD). That's all
part of the challenge of autism."

I think sometimes when friends say these things they are trying to make you feel better. I mean I think sometimes it's hard for them to know what to say.

Relatives, especially parents, are often in denial.

Interestingly enough, when I first told my mother that ds was being evaluated (at 19 mos), she was adamant that "there's nothing wrong with that child!" Rather than have to "deal" with her feelings and be told that I "baby" ds, I let it go and after he was evaluated I told her all was fine (not that he would be needing OT, speech, play therapy, etc.).

Now, ds is approaching age 4. Over the years, my husband and I have never discussed ds's issues or the fact that he has a SEIT at pre-school, get speech, OT, etc. - when he's not around other kids, ds can basically "pass" as NT, albeit babyish.

But recently, I've seen my mother look at ds differently and ask me in a different voice "how's he doing?" I think she's starting to clue in that something is off. And, that's fine. I'll wait until she gets there on her own.

This is usaully due to people not wanting to see or they watch the stupid shows like Oprah who only show worse case scenerio. I get the same response from my mom, I don't see anything wrong with him. You baby him too much. Blah blah.

If most people don't see it be blessed that your child is like mine, they CAN act "normal" and can function as well as they do, It means you have it under control for the most part. .............or your kid does.

Try NOT focusing on the fact that your child has a prob. and realise it's just a minor set back. The therapy IS working and helping. [QUOTE=fred]

In my experience, people who say things like, "he seems fine to me" or "he'll be ok" and make similar comments are trying to be nice and trying to say the right thing. They are not trying to be mean and are not dismissing or trying to trivialize the challenges that parents of autistic children face, nor are they implying Munchausen syndrome by proxy

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I completely agree.....I think some people are eager to say the right thing, and to them....the right thing would be " he looks great "......imagine if INSTEAD of what she did say, she instead pointed out every teeny tiny thing and obsessed over it ?

Unless you are actually walking in these shoes....you can't fully understand or appreciate all that it encompasses. Even best friends who hear all the details.....can never fully understand it.

My FIL is diabetic ( since his early teens ) I THOUGHT I understood how much went into his care and his regimen......UNTIL......my son was diagnosed at the age of four and I understand that "outsiders" could NEVER understand it, even if they "get" all the medical facts....just as "outsiders" can't get autism.....

At least it sounds like you all had a great vacation !!