Telling children they have a disability. When and how?

United States
January 19, 2007 6:46am CST
I was curious.. my son is only 3. He has Autism- he's high functioning, but there are some delays, and some obvious behavior issues. Although it's impossible for me to read his mind, it seems hard for me to believe he would understand what Autism means, much less what the implications of that will be for most likely the rest of his life. His sister (who is 4 1/2) knows the word Autism, because just over a year ago, we went back home to visit family, and one of my younger cousins has Autism (though more pronounced than my son). I wanted to prepare her in some way. I wanted to explain that he was a wonderful boy, very intelligent, but that he might not talk respond to her when she said hi. He might not play with her, because he has his own things he prefers to do instead. He might not hug her- he might run up and pinch her to say hi (not to hurt her, but because his way of expressing himself physically is different). And they were fine together (until he came up and hit her before we left). And yes, she does know that her brother has Autism. Though we rarely talk about it, because that's not who her brother is. It's just something he has. But I want to know from other parents- of kids with Autism AND other disabilities. When (if ever) is it appropriate to explain to them that they are different (special, but different)? Only if they can understand it? Only if they are old enough to start handling their own affairs? Once they're school age and people start picking on them, as neurotypical kids will tend to do? Can you please offer me some advice?
6 people like this
27 responses
@cjsmom (1423)
• United States
19 Jan 07
Hi, sylvie. You know that my son, CJ has Autism. He's 8 years old and doesn't have the concept of many things in life. He has no clue at this time that he is different; I truly think that he doesn't even care right now. But, I got to thinking that one day something might happen to me when we're at home together and daddy's at work. You never know. I taught him how to call and speak to an 911 operator. I told him to push 911 and when someone answers to say: "My name is, Clinton Hunnicutt, I'm 8 years old and I have Autism. My mommy needs help. I live at, (the address and emergency code # on our front yard). I won't know if he can actually do it until the time comes but we go over it almost everyday. I feel that they should know at some point about their disability but it's going to be different for each child; time frame wise. Each parent will, should know when their child will be able to understand, etc.
2 people like this
• United States
20 Jan 07
I think it's great that you have taught him that. And hopefully if and when the time comes, he will be able to do what needs to be done. He might just amaze you! :)
• United States
20 Jan 07
disability is a type of pain that makes that person different, and it is to me letting the world know that we are all different in a way. God blesses all and there is not a good way to tell or show some one they are different. It is a way to go it, but it's up to you how you teach a person there difference. Make them see that being different is a sign of making a change in a way that will help some one else in the some place they are. Help them see that life could be harder...
• United States
20 Jan 07
Well, he definitely knows I love him. I mean, even if he doesn't understand the concept, I tell him all the time that he's my handsome man that I love. I sign to him that I love him. And sometimes he repeats it back to me, and hugs and kisses back.
• United States
22 Jan 07
My kids are 2 yrs apart and my son was dxed with Aspergers at 3 1/2. I explained everything as we went along. My daughter who is 9 now is my sons best friend. If you(or a classmate,neighbor etc) asks her why her brother spins in circles or has to make chewing noises all the time she will calmly tell them that he thinks different than us.I can't offer much help in the school question as we have gone through a nightmare with our local school. My sons K teacher grabbed him and dragged him down the hallway trying to get him into the classroom. When confronted she and the district said it couldn't be helped because the teacher didn't have Autism awareness classes..SO I guess it must be ok...NOT!@!We are now homeschooling him for K and are moving out of this state to a more autism friendly state so he will get the education all children deserve!
• United States
22 Jan 07
I should also say that he has always known that he is different. It is the way *you* act towards the dissability that makes the difference. I honestly feel that as long as our kids feel safe they will excell.
• United States
22 Jan 07
I pretty much treat him like he doesn't have a disability. I mean, in many ways, for many reasons, there is no reason to. I expect him to behave himself, like I expect his sister to. I expect him to have (some) table manners, say please and thank you, not scream inside buildings, not run down hallways, etc.. you know what I mean? I never tell him he's "special". Of course he is, but really, how is he any more special than my neurotypical daughter? He's my child. He's always going to be special to me. :) My daughter (4 1/2) does ask why her brother repeats things, or why he does certain things, and sometimes I say I don't know. Sometimes I say it's because he has Autism (and briefly explain what I mean). It just depends. :) As for dragging down the hall, I'm sorry your son's teacher did that. I would probably be upset if I saw that. On the other hand, I find I have to laugh. My son is quite a handful, and there are several days of the week I find myself practically dragging him out of the building, off the piano bench, or whatever. I've never had an Autism Awareness class, but sometimes my son is so overwhelming- and it's either grab his hand, and force him to stand up to come with me, OR I wait for him. I stand there, watching him lay on the ground and scream or do whatever it is he's going to do. It's frustrating as H#ll! But I totally agree- the teachers should not be doing that. I hope I don't sound like a mean parent. I try not to be. I'm just so overwhelmed with my son and his behavior, sometimes. I feel like I have the only kid in school who flips out on a moment's notice..
• United States
22 Jan 07
You aren't mean! There were times when my son was your sons age and boy oh boy I had to carry him out of stores...drag him in and out of places and scream just so others co9uld hear me over his yelling.Even today...my daughter is home from school and I was helping her with school work. *A* was sitting on the floor saying,"Baabaaaaabbbaaabaa" over and over. Just so I could help my daughter I had to scream like a psycho! It is just part of parenting a kiddo with AS. It is amazing that *we* aren't the ones spinning in circles screaming! LOL I'm here if you need to chat:)
@mobyfriend (1019)
• Netherlands
19 Jan 07
Theree years is a bit young for any child too understand things but in due time certainly when he goes to school you must tell him that he goes to that school because he has special needs. Be concrete about it. These kids are sometimes very smart and althought they can't communicate what they feel they sure do know that they are different than other kids and can feel the pain that sometimes causes. And one thing they certainly feel is the love you have for them. Concrete information and that will help your child to face the problems he has to cope with him. Try to meet as many parents with austic children as possible: online (myspace for example has several groups) or in school. You can help each other by exhanging info when you are dealing with certain issues. Take care.
• United States
19 Jan 07
He's in special preschool right now, with all sorts of special needs children. Only one of them that I have seen has an obvious disability- I'm not sure what issues the other children have. I think he might be the only one in his class with Autism, but I'm not sure. His friend with the obvious disability often rides in a wagon because he has a hard time walking, but then again, they all take turns in the wagon. So I don't know if he even realizes there is a "special need" involved.
@clownfish (3278)
• United States
19 Jan 07
It's the same with my daughter's class. There aren't any obvious disabilities except for the boy who doesn't talk at all. Last year there was a little boy in her class who has Down's Syndrome. She never once asked about him. She just talked about him being a friend. I think you're right, disabilities aren't really obvious at this point to our children.
@Dolcerina (3379)
• Hungary
19 Jan 07
I am not in the situation than you are, and maybe I say stupidness, but I would not wait for an exact date. I would let him know it day by day. Maybe he will understand that he is ELSE, only after you say it 20times. I think he will need time to understand. So I would not wait for the time. Children are stronger than we think, because they do not know what this world like. They accept that the parents and adults say. Because this is just a new information just like many others. The children can not make difference bettween the important and not so important informations. So, that is my oppinion. And sorry again if I am not competent to speak.
• United States
20 Jan 07
I appreciate your comments. :) You said not to wait.. Knowing my son, if I told him he had Autism, he would repeat this. And while having Autism is nothing to be ashamed of, I don't know that this is something he needs others to focus on when they meet him. If he goes around saying "I have Autism", that draws attention to something that pales in comparison to all the wonderful, positive, sweet things that make him who he is. I don't want people to hear him say that and think "oh how sad!" or something like that. I don't want people to feel sorry for him.
@Dolcerina (3379)
• Hungary
20 Jan 07
I see. Well you know him best, so you will know how to tell him. But I did not mean to say the word autism to him to understand, why he is else.
• China
20 Jan 07
am so sorry,i dont think it is neccessary to tell him now because of his age,but if he insists maybe asking you question about it i think you should tell him.
• United States
21 Jan 07
Thankfully he's not asking many questions right now. He mostly asks for help, for things he needs, and is finally asking me to sit and play with him or to read him a book. That is it. But eventually, *maybe* he will ask me about the way he is.
@Bakuhn7 (132)
• United States
20 Jan 07
I am 17 now, and I myself have a heart problem wiht my tricuspid valve. When i was about 5 i went trhough my first open heart surgery. That was when i was told about my problem. I feel that most peopel cant realy remember when thy were young, primarily around 1-5. I would have to say that it is best to know when you are young, allowing time to undertand yourself and whom you are, than to let it be discovered with other children as the child grows up and begins to go to school. If your child eccepts whom they are at a young age, you wont ever get any of those " why me?" questions, they will understand, that "this is me, and i am what i am". I hope this helps you out. God Bless
• United States
20 Jan 07
Thank you for that. I can see your point. Perhaps the more time you have to adjust to the "news", the better. I hope you're doing well now health wise?
@Shelite (212)
• Canada
20 Jan 07
I really have no idea. But I would make in an open discusion in your household. Don't try to hide it at all. Talk about it like anything you'd talk about in the house. Good luck. I'm sure this is going to be tough.
@dmajkc (197)
• United States
20 Jan 07
This is a tough situation to try to give a "one size fits all" answer. I guess first you should not let your child feel different. I know with Autism that is going to be difficult, but no two cases are exactly the same with this disorder. Try to talk to him about gradually instead of all at once. This way the child can process it a little at a time. Let him feel secure that he is unique and that being different can have it's own benefits. I hope that helps
@pdp5419 (43)
• United States
20 Jan 07
Dear sylviekitty, I am the mother and an educator and have been working with children that have various learning disabilities for over 20 years. I am also the mother of very intelligent daughter with attention deficit and hyperactivity issues. I was ofter frustrated with the kids perception of themselves after they had been labeled with a disablity so I began years ago to tell them they were learning different not learning disabled. They learned differently and it was our my job to find out the way they learned so that I would know how to teach and they would know the special way they learned. What happened was very unexpected, parents and other educators, the students and me all began to see them differently. They were not damaged they just learned differently and sometimes slower, and that was okay. My daughter is 22 now and has very bright, very active twins of her own. School was challenging for us both, but I had the privilege of working at a very special school that was for students with severe behavioral issues. It was a very structured program where the motto was "Catch a Kid doing something right" We started each day identifying students daily goals and ending each day reviewing our progress on those goals, so that kids would see they were making progress. I helped parents to do the same things at home. It took a while but what I loved most was when kids really understood they were Learning Different not Learning Delayed. I told them how special they were and the younger the better, they could hear at a very early age that every one is different. I still cannot play video games and my students have spent years trying to teach me and the progress has been slow but they don't give up on me. I haven't told them I have no intention of getting better so that they always have something to teach me. I will look through my stuff and see if they are some age appropriate story books about kids who are different. pdp5419
• United States
20 Jan 07
Thank you- I also feel it's "learning different" and not "learning delayed". I mean, there are obvious delays with my son, but when I explained to my daughter the fact that her cousin had Autism (and then found myself explaining to her what that meant), I did use the word "different". He just does things differently. And there's nothing wrong with that. We all tend to do that sometimes. :)
@rainbow (6763)
21 Jan 07
I wish I had some good answers for you, it's very worrying when we try to see our little ones futures! Bong got his diagnosis of Autism and ADHD when he was 5,and I told him then so he knows it is just a name for why he can't do some things. He didn't really start to notice the differences from other kids until he was nearly 7. He keeps telling me he is slow doing things and sometimes kids laugh and call him names. I tell him we all learn different things at different times and he can probably do some things better than they can. I try to keep it simple although he is quite high functioning and attends "regular" school. I just deal with things without making too much fuss in front of him and let the school know, you need to try and get them on your side and to participate in some teamwork towards your sons happiness. I wish you all the best at finding brilliant ways to help him!
@tapeshnlu (350)
• India
20 Jan 07
if some one is having a disability he should not be told it all of a sudden and disturb his mental balance. nor we should keep him in dark that he gets to know through someone else.then it really hurts
@pusiket (1759)
• Philippines
20 Jan 07
Accepting and discussing the truth is the hardest and sometimes the most hurting thing to do. But you need to be honest and i doing so, think of the bright side of it. It will help your son adjust to the truth and will learn to accept the truth by himself and throguh your explanations.
• India
20 Jan 07
The elder ones told the children's disability during their weakest performance against their neighbour.
• United States
20 Jan 07
I feel that there is no appropriate age, and that it depends on what level of understanding he is on as well as the enviornment that he is in as far as school, play groups with other kids his age, if he is around other autitic childen, ect.. my son is almost 5 and has severe albinism, and I know that it is not mentally disabling, however most people do not realize how physically disabling it is, my son has always known that he could not see things very good, as his vision is severly impaired because of the albinism, but I dont think he knew that other people could see any differently until this past year. A friend of his was pointing to something trying to show it to him and my son could not see it, that was the first step in his realization that he was different, the second was when he began to pay attention when people who would see us in public would ask why he was so pale or what causes his eyes to move back and forth (nystagmus), and why they never stop moving, he also started noticing how no one else had to be so close to things like pictures or the tv to see them, so he began asking questions and I slowly over a few month process had to explain what his condition is and why his is different, but I pointed out how much he can memorize easily, and how he can hear better than alot of his friends, ect, while explaining his disabilities I reminded him of his stronger ablities. he still does not know everything about his albinism, but he knows enough and what he can handle right now. You will see signs that will let you know when it is time to discuss this with your son. Good Luck
@abhiquest (580)
• India
20 Jan 07
I think it becomes a bigger issue for most of the parents themselves to realize and accept the reality. The overstretch at times, trying to compare their kids with others and see it as a failure for themselves and for their children. It takes a lot of courage and fortitude to accept a 'special' child as a 'special' one. There is no need to 'protect' them, they just need extra care and attention and above all love and affection.
• United States
20 Jan 07
I'd incorporate the words into everyday life as any other word. So the words just seem like any other word. As far as explaining the words, just answer their questions as they come up. Most of the times kids seem to know more than we think they do. When you daughter needs to know what the words are or why her brother seems different than some of the other kids she knows, explain it in an age appropriate manner.
• United States
20 Jan 07
Your son has the right to know why he is special. If you suddenly see him being less active and not as happy, kids at school may be making fun of him. You will know when the time is right. Best of luck to your son!
@kgwat70 (13396)
• United States
20 Jan 07
I think it is best to tell them they have a disability as soon as they are able to understand what a disability is as they may not understand at a really young age. I am sure at some point they will know that they can not do the same things as other kids can do and will start asking questions at some point.
• Thailand
20 Jan 07
HI , just keep cool and give the best positive note , you have to grow your kid and make him more stronger
• United States
20 Jan 07
I think you should explain this to your child when he is old enough to understand what it is.I think your child is a little to young to even know he has a disability but sooner or later he will understand it and then you could explain it to him.