Do you tell people your child is autistic | Autism PDD

Great topic,

As a father, I can honestly say I was never ashamed of Ryan's Autism nor felt as if the "label" was a problem. We celebrate him in every way and feel proud that he has done so much even though he has more challenges than others.

My wife and I took the approach that he has a gift in that he brings so much joy to our lives and those he meets that to think of his Autism as something to hide is just silly. Others know almost immediately that there is something missing with Ryan, but they also love the way he is so affectianate and fun to be around that the Autism falls to the bottom of the list of things to remember about him.

Our biggest difficulty was getting the diagnosis to being with. That was the hard part. Everyone was afraid or unable to just tell us he had Autism. I'm sure some of you can relate. In any case, once we knew for sure (around age 3), it actually became easier to manage and explain.

Every family is different but we do keep all of you in our prayers and certainly enjoy participating in these forums.

Best regards,

Mark

http://talusmusic.com/MarkMathis/Shine/Songs/Shine.mp3

My son is older and it's pretty obvious something is wrong, but most people think "ADHD" with him. Of course, they don't live with him to see his strangeness at it's maximum...lol. We tell the schools. He decides who he wants to or doesn't want to tell other than that. I was in waiting room with my ds for 1 hour. I let him shred magazines and lay on the floor so he wouldn't cry and run out. Two sweet older lady sat down and asked about him. I said he had autism and they smiled and said he was one of God's angels. Since then I have been telling a lot of people, spreading the awareness. No one knows what this is so I get to answer a lot of questions. I work in a gas station in a small community and I know lots of the people well enough. One lady came in and apologized for her son's tantrum and explained he had ADHD and that I wouldn't understand. Oh boy! Did I have some things to tell her. My son is 7 and I would love if he could talk and use the bathroom and chew his food without choking. If my son could be like her's it would be a miracle. I told her autism, ADHD, multiple food allergies, eosinophilic esophagitis. I had to laugh, me not understand?!? I used to not talk about it because I would start crying. It took me a long time to get over the grief of not having my idea of a little boy and wanting better for him. My son is low functioning and going to the store is hard work. We couldn't pass other people closely or my ds would grab them or their purse or their kids' hair. He pulls stuff of the shelves and throws them. I would quickly say I'm sorry, he has autism and doesn't know any better and that seemed to work. Luckily Wal-Mart has some carts with the big plastic seat and he likes to ride on that. And it's got buckles, his favorite. Anyway, I feel we should let people know so that next time Oprah does an autism show, the NT parents will want to watch it, too. I've had a hard time finding doctors that know enough about autism. How are we going to get answers? If people are not aware of a problem, why would they want to help fix it? We need research and knowledgable doctors and good caregivers, spread the word. I tell anyone that asks about him...I answer questions about his dx if they ask. You'd be surprised how many people are interested in learning more...most people don't say anything negative once they realize he can't help it.

[QUOTE=mollyalexis] Also if they ask what school he goes to. [/QUOTE]

Oh yeah, that too! Having twins that go to 2 different schools in two different districts usually needs an explanation!

Right now only our immediate family and grandparents know. I have dealt with it on a "need to know" basis. I have done this so she would not be prejudged. She is four and so far does not have true "melt-downs" hers are pretty brief in duration and much more resemble typical toddler tantrums. Three weeks ago she started at a nerotypical preschool. We did explain her diagnosis to her teacher and the aide in the room. We explained what behavior they might expect in certain situations and what they could do or say to eliminate the situation. They have been very good with her. I'm sure as she gets older it will be necessary for us to tell more people. We live in a very small town and I am afraid of people's misconceptions following her. I am not ashamed just trying to protect her the best I can.

We have a cousin who recently graduated with a degree in special education. She visted us one evening and spent a good four hours around our dd and never realized she was on the spectrum. She just assumed she was a little shy.

ttfn

In the very beginning, I felt like I had to make excuses for him to other people on why he acts the way he does. It took a lot of therapy

and a lot of coming to grips with the fact that this is just plain reality. My son is HFA/severe adhd and I am totally ok with that (finally). He is my child, I no longer make excuses, I simply say "he has High Functioning Autism and severe adhd and that is just who he is..take it or leave it. The way I look at it, if they have a problem with him, then they need to be the one to walk away or remove themselves from the area that he is in. I WILL NOT make excuses for my baby being different ANYMORE! I love him for who he is, quirks and all. Now, when I state his disability, it's more of an explanation not an excuse. He didn't ask to be born this way, and if I don't stand up for him, then who will?

Now that I have come to grips with his autism/adhd, I feel NO need to hide it from anyone, and will tell anyone who will listen, how else are we supposed to spread Autism Awareness? I am proud of my son and that is all that matters.

I tell people every chance I get....

More awareness the better

[QUOTE=mathis]

Mark

http://talusmusic.com/MarkMathis/Shine/Songs/Shine.mp3

[/QUOTE]

Beautiful song

Best regards,

Mark

I actually for the first time said to someone that my son was autistic. My son can get loud and I remind him about using the inside voice but it doesnt always work. In this case we were visiting my dad in the hospital and a nurse said to him rather nastily "this is a hospital". I said to her rather nastily that he is autistic and is doing the best he can. She apologized.

[QUOTE=DisneyMommy]I usually only tell people if they need to know or those that seem curious about my sons behavior. [/QUOTE]

Me too!

For example, I thought his soccer coach needed to know, but not all of the other parents right off the bat. However, last year C had a meltdown in the middle of a game and as C's reaction was quite out of proportion to the precipitating incident, I told the other parents (we were all sitting together) that C has autism. I would rather people know that my child has autism than just think he's a brat who throws a tantrum because he doesn't get his way.

I usually tell people if it needs to come up. If he's doing something strange or tantruming. Also if they ask what school he goes to. I don't mind, he's my angel and it's part of him.

I used to not mention anything as i was still denying it to myself and if anybody mentioned his behaviour i would just say kids will be kids they all have their bad days. but now i have fully accepted that my son is different and and if i see fit to mention it i will for example when he is having a complete meltdown and people are just staring at him then giving me a dirty look as if to say take control of your child you stupid woman!! i will say "dont look at me like that my son is autistic he cant control it anymore than i can" and if that person actually makes a comment to me i will say very loudly "how dare you stand there and judge us, were your kids perfect 24/7" this usually makes then feel like i feel for them staring at us and they walk away very redfaced and i feel loads better. i have to say autism, aspergers, adhd etc are very open subjucts over here in england they are not as taboo as they were years ago ond it does tend to be older people you will try to pass judgement.

So if you feel like saying something then just say it i dont class it as labeling, your children are who they are and if people can not accept that they can stick it up their backside!! to put it politely! The are the ones with the real problem in this world its called IGNORANCE!!

good luck to you

I usually only tell people if they need to know or those that seem curious about my sons behavior. That is so sweet about the park. Leah has a great group of friends at church. Almost everyone is very understanding. Her cousin that is the same age, is very close to her and very protective. He looks out for her. I tell people. I found that the way I tell people usually sets the tone for
how they will perceive him. If I left it up to people to come to there own
conclusions they will probably just think that he is an ill mannered child
with clueless parents.

It depends on the circumstance, really.

Once, I had both boys at the park, and Cole lost his first tooth. One minute it was there, and I noticed half an hour later he was smiling without it! So, while I bent over and walked around desperately looking for it in the sand, the boys went over to the sandbox.

Several tweenage girls were in the toddler sandbox building castles, and apparently, Cole was shoveling sand with his back towards them. He was tossing the sand over his back and it was getting on the girls. They must have told him to stop, but of course, he was on another planet.

A mom came and got me, and kindly said my son was tossing sand. Mortified, I said -gosh! I"m SO sorry. He lost his first baby tooth here somewhere and I'm trying to find it.

When I got over there, though, some mother was SCREAMING at the top of her lungs STOP THROWING SAND!!!!!!!!!!!!!!!!!!!!!! at Cole. His back was toward her and he didn't even turn around. I walked right over to her and her 4 friends and called out, EXCUSE ME, MAAM? HAVE YOU EVER HEARD OF AUTISM? I smiled and said, autism makes it hard for my son to communicate.

I gently put my hand on Cole's shoulder and sweetly told him he was getting sand on the girls. He turned around, looked at them and said I'm sorry!

The woman melted with embarassment.

I tell when I think it will help him be understood better--or so an
instructor can have a chance to be more sensitive to him.

Recently, I GUSHED to a mom at the park--her older son was actually
playing with Jasper, sharing his toys and what not. He was completely
NT, and just ascribed Jasper's lack of recipricocity some times to the fact
that he was only 4. I said, "Oh my God! You have NO idea--my kid has
AUTISM and has never before EVER egaged with another child at the park!
It says so much about your boy and his gentle temperament!" She
thought i was crazy for only a second--then we had the nicest
conversation!

She said she should really learn more about these kind of things, so she
can teach her son about the different types of kids he might run into at
the park or school, and help him be sensitive to the kinds of differences
that might not be readily apparent to him. She made some really nice
observations about how well my child seems to be doing..So, you never
know! I've had more good responses than bad.

I tell the people who we are close to about his diagnoeses but others in public I just say he has some delays that we are working on.
It works for right now.

Aw, MamaKat, that is so sweet about the park! We had a similar experience recently at the water park, an older girl maybe 6yo invited my dd to play with her buckets and then patiently showed her how to pour the water from one to another and my dd actually did sit there and play (didn't talk but hey, she was interacting in her way). It was just so nice and we didn't have to say anything to anyone about anything.

When my dd was first diagnosed I did buy a shirt for her to wear in public that said "autism is beautiful" and it did stop the glares. She does not wear it anymore and I only tell the people who need to know, anybody else gets the "she's just shy" explanation.
i use to tell ppl who i know when they questioned a lot my son shyness or when they ask if he talks. now i just say he had delays but is catching up.

I'm very open. I want a happy face button that says "Autism? Ask Me! " I live in a small community and I believe they will be more accepting if they know he's not just some spoiled brat. There is another autistic and blind child (Now young man )in our area. He is locally famous for being a musical savant, so when I mention autism, they think of J. I have to explain Sam's talent is not music. (HATES it)

I think talking about it in a positive way opens the door to understanding and acceptance.

mama to Sam PDD NOS OCD ODD PPD and Alex 2 yrs

Oh, and your daughter is breath-takingly beautiful.Yup if he's having a really bad meltdown or wont listen. I hate labeling him but I guess people change there attitudes when I let them know. I hate the evil looks.I am very open as well. Yes I tell people all the time. Especially if they glare at him. I want a button that says "my son has autism, what's your excuse!"At the park or places like that we say delayed if we strike up a conversation with someone, which happens often because we most likely get a comment about the twin thing. If another child comes up and tries to play with them and they don't respond and the child looks at their parent all confused I might say something to the parent. The only time I say autistic is in public places is like to the server at a restaraunt, we do get much better treatment if I let them know what we are dealing with and its a much more successful experience. But for the stares no, DH always says stop screaming people are staring at you, it is very effective, they turn away immediately. He also says to them I know you can't help but shhhhh its ok, you're ok. He also says this more for other people's benefit than for their own. When I do use it though I get a lot more understanding.Mostly I only tell people who need to know. People who will be caring for them, fmily and friends. the neighbours know- but thats because someone else took it upon herself to tell them. In public and at shops- no, even if the kids are having a meltdown. When it comes to my daughters lack of speech I just say she has a disabillity and finds it hard to speak but that she understands you. I did tell an old lady once who was very rude and said my child needing a good smacking( she was playing up a little but not that bad)- she didn't understand and proceeded to tell me it was my fault and I shouldn't bring her out_ i got furious and ended up swearing at the old #####. I really don't think it is other peoples business. Its not a matter of being ashamed, thy should just get to be kids first. Liz [QUOTE=maisa]Oh, and your daughter is breath-takingly beautiful.[/QUOTE]
Thank you!
I find myself in a quandry.

I don't like labeling my precious girl for everyone. However, on the flip side, when she is breaking down or people will have her for a little while, like at church, I don't want her viewed as this horrible child because she doesn't listen etc....

But what if you are, let's say, at a park and someone makes a comment on her child's lack of speech or something else...

I have never had anyone say anything in the store yet... just the looks... you know the ones

Or maybe I shouldn't care... small town everyone probably knows already anyways. I am sure we were the buzz when she was lost for 2 1/2 hours.

You can say speach delayed, developmental delay etc.. they are all true too. It's just a label after all. I live in a small town and don't tell people except teachers. It's a personal thing. I tell people who need to know. My thoughts are autism is a disease like every other disease out there in the world. It does not define my child it is part of my child and makes him unique and special. As for church most people know and accept it they are willing to learn and understand how they can help. That is a big change from where we used to go to church because we were judged harshly and were told we were being punished by god for having an autistic child. I think there are lots of people who just don't get it. My thing with it is though is if you don't live with it you don't know so another thing I would do and have done to the rude people at the store is to turn around and say I am glad you are staring my child has autism. It affects 1 in 150 children would you like to know more. They usually quite staring or else say something like sorry. Another thing you can do is carry the little signs of autism cards and hand those out it usually stops the problem. Our children again have disease and if you choose to share that it is your choice. But as I said previously I feel autism is part of my child it doesn't define him. I struggle with this as well. I put him in a summer program and ws really concerned with giving him that label, as I didn't want him judged before we started. I opted for speech delayed instead and they never said a word. It really depends on the circumstances, but I lean towards the speech delay for sure.

We tell speech delayed to those who have a vary bad image in mind about autism. To those who know autism is a broad spectrum, we tell them he is midly autistic, which is the truth of course.

Daddy