How do you refer to your Autistic child?

Danielle - posted on 12/26/2011 ( 23 moms have responded )

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Hello ladies,

I am just wondering how you inform people that your child is Autistic?

Does your child know they are Autistic? What have you told your child when they ask why they are different?



I was talking with a relative, and they believe that I shouldn't tell people that my son is Autistic because it will give him a label, and may further give him the leverage to use it as an excuse when he is older..

Ex) My cousins teen will completely act out, (he had A.D.D), and will say "It's not my fault. I am not on my meds."



My relative thinks that by giving him the label, he will be restricted by his expectation as an Autistic person, and will not have the confidence to accept that he is capable of achievement, with or without a label.



My toddler is three years old, and I feel like I need to give people some explanation when he has major meltdowns over the smallest things. He whines a lot because he is non verbal, and I think it puts strangers in an awkward position.

So far I have told people that he is "sensitive", but I feel like that doesn't sum it up properly.



Today I had a friend over that I haven't seen in a while, and while my toddler was overly stressed and sensitive to the fact that a stranger was in the house, I tried to explain to her that he shows many signs of Autism, and we are in the process of getting him diagnosed.

I had a hard time saying the word "Autistic" out loud.



Does it get easier with time? How do you work a conversation into explaining? Do you ever get the feeling like people don't believe you?



Thanks so much in advance.

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Bobbi-Jo - posted on 01/03/2012

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I used to live in a community with a large elderly population and I would constantly get nasty looks and comments about putting my child in his place, etc. About 5 years ago I had pretty much had enough and made some business cards that said "My child has high functioning Autism and sensory issues. Sometimes he can not help what he does; but you can. Please keep your comments and dirty looks to yourself. You have no idea what my child and family go thorugh on a daily basis." I would hand it to them and say "please read this". Most of the time I got an apology other times I got another snarky remark and I would basically say "My child works hard and can continue to work hard on doing things better but you sir/madam will always be negative and nasty. Have a wonderful day" and then I will go on with whatever I'm doing. I do my best not to treat him any differently then my other two sons. And I've explained to him why he is different. Sometimes he is very aware of it and says he can't help it and is trying very hard to stop whatever he is doing, other times he says he just wants to give up. It totally depends on the situation and mood he is in. I know this is long, but I hope it helped a little.

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Use the word - destigmatize the word. Your son is not broken or defective. Autism is part of who he is, and will be for the rest of his life. My favorite analogy is Mom-NOS's toaster/hair dryer brain thing: http://momnos.blogspot.com/2010/03/on-be...

Introducing your child to his diagnosis isn't going to happen in just one conversation - it's going to take many conversations over a long period. I wrote a children's book to help parents start this conversation: "Ben Has Autism, Ben Is Awesome," available at jasonandnordic.com.

Janet - posted on 12/27/2011

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Okay firstly, yes. It does get a bit easier over time.

I explain my child's Autism when I need to, and don't mention it when I don't feel like it LOL! I have two girls on the Autism spectrum - aged 4 and 6. My boyfriend has two kids, a girl aged 8 and a boy aged 3 - and they all "act out" for various reasons. His little girl is waiting on a bipolar diagnosis and the little boy, so far, is just rowdy!

It really depends on the situation, the severety of the meltdowns, how many comments I might get etc. I also tend to handle it differently than my mother - while good intended I don't necessarily agree with her approach.

And while its important for us to learn to react and know it will get easier for us, its also important to know that it will get better for our kids too! They will learn how to cope better with things that bother them and outings will get easier for them.

Let me explain a little more - if one of my kids is simply 'fussing' and letting me know that our time out is coming to a close because they're getting overwhelmed, I generally use the smile and nod approach when people openly stare. If one of my kids is having a full on meltdown about something, I may mention to the nearest onlooker or commenter that "Oh, well she's Autistic and this store just has so much going on in it! She could handle it for a bit, but now its time to head out!". I also have little 'business cards' that I print out and keep in my purse or pocket. It tells someone that they've just witnessed someone with autism having some difficulties, thanks them for their patience and gives them a link for more information. I rarely simply say they have Autism and leave it at that. Generally people don't understand what that really means.

My mom handles it a bit differently - almost as soon as one of them has an issue, she will tell anyone looking too long that she has Autism. And a bit snarky too LOL. I don't recommend that approach. There's no joy for me in making some old lady feel bad because she stared too long at something she didn't understand.

You will find though that telling people about Autism may make you feel better, and spreading the awareness of what people are experiencing is certainly not a bad thing.

But yes, it gets easier - to talk about and to live with :)

Lydia - posted on 01/13/2012

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My daughter is 5 and recently diagnosed with Autism. I dont shout it out from the rooftop that she is Autistic but do tell people that will need to engage with her primarily (i.e. doctors, dentist, ) that way their approcah is a litte different and more understaneding when she shys away from their touch or begins to melt down in their office. I think telling people is at your own discretion. I also believe that if you understand that just because your child is Autistic does not mean that there is anything wrong and making sure that your child understands that is very important. Although my daughter is 5 and does not quite see herself as being different (nor do her classmates) just yet I am determined to make sure that she understands her condition and let her know that she is not different she just learns things in a different way. I have yet to experience someone that does not belive that she is Autistic I have lots of booklets and reading material around my house to they are able to read up and get their own understanding of it. I would also check in your area to see if there is a Regional Center or some kind of support center that could help you to explain to family and friends exactly what Autism is.

Elisabeth - posted on 01/11/2012

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My son is eight and has autism, epilepsy, allergies... and we talk about it, and what it means for him in his life, and that he isn´t autism, it´s just something he has. I myself has ADHD and my daughter age six might have that too. I stress to myself and my children and everyone around that autism/ADHD is an explanation to a behavior or problem, but not an excuse. An exampel; I might not be able to stop myslef from saying or doing things I should not say or do (the same for my children), but I can, and must, take responsibility for the concequense of my actions, appologize, make things right etc. And I can plan ahead and have strategies to prevent or minimize situations to appear. In other words, make sure we´re not hungry when we´re about to do something, not too many activites during on day, plan "resttime, nothingtime" in the scedule. Always plan ahead, always keep food and water in my bag...:-) It makes life easier. My children and I have knowledge and strategies (and of course it doesn´t always work and sometimes one or all of us falls apart). And we talk about it. We talk about being different, that other people might not understand us, or that we don´t really know what problems other people has or what they actually think (judgment goes both ways, never forget that we can´t see in peoples minds):-).

About telling other people, I find it´s usually easier if people know. More people than I expected understand, most people don´t, and some don´t care or don´t "believe" in ADHD or autism. But usually it maikes things easier for us and for them. I used to tell people when my son was younger. Now I talk to him first and ask if he wants to talk about it, or I, or not at all. Usually he wants me to tell and then he might add something. Or not.:-) We keep it simple, with humor, and with no shame or accusations.

Sorry bout my poor english but hope you got something out of it.:-)

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23 Comments

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Jodi - posted on 01/14/2012

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In our family it's quite easy. Trace has Asperger's he's five. Mom is bipolar, the boys tease me and say mommy did you take your pill lol. Daddy has a brain injury so my 5 year old Trace calls him lazy brains cause he forgets everything. I don't think I worry about labels, because truth is - Trace is Trace, JJ is his big brother, daddy and mommy are the parents. We all have jobs to do, we might not always get along with each other or others, but respect is important, using our words is equally important and we always always have decisions and choices to make, disabilities aside - there are no excuses. I try to teach Trace coping skills, and when others don't understand and give the snide remarks or comments "Why is he behaving this way?" or they tell me "He's spoiled you should smack him." I am blunt. I don't say hey he's got Asperger's back off! I simply look at them and say "Have you ever had a bad day? Maybe you should get smacked for it? See how you feel." For those who ask, I explain. He has special abilities - and they get it. I pick and choose how much I want to say and so forth and when Trace does use it - Eg: I have Assssssssss burgers he calls it lol I talk to him and explain that doesn't discount his behavior and we work on accepting our responsibilities.



I think if you do that with your daughter you will be fine. You are her mom. Love her, and don't worry what others think, because in the end. You are the one she will learn from.

Anne - posted on 01/10/2012

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My son is 11 and has aspergers as well as adhd so we have had lots public meltdowns. He is tons better I did tell him about asperger's and he is aware. I did not make a big deal with about it just told him his brain is wired differently but he is just like everybody else ie 2 arms 2 legs etc. When he was younger I would tell people but when he turned 8 or 9 he told me to stop telling people because it embarassed him. I just now tell them he is a unique child with a different way of operating. He thinks that is funny. I am with you about how difficult it is to deal with strangers but now it does not bother me anymore if they stare I stare right back but mostly I just ignore them.

Bec - posted on 01/10/2012

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To add to my other post my son is aspie and adhd he is louder than what I was and is ofter looked at by his peers as an outsider gets bullied I kinda hope he will be apreciated for his differences rather than viewed a freak but he in primary school and that was the hardest for me to as young kids can be cruel. I have allways told of his diag. yet he is more able than most of his peers he mows a lawn, washes the car feeds pets helps with the whipper snipping cooks a meal and believe me this was a journey for us both as ive had trees ring barked ive had reds mixed with whites in the machine and ive had a sandwich travel from one end of the kitchen to the other lol!! he was keen to learn these things and i didnot hold him back. oh ive had suds all through my laundry too like on the movies. but he feels so cleaver and independant for it and he has always been fiesty and wanted that kinda knowlege oh he also fixed my pc after the company and three neighbours could not work it out. i felt bad i did not ask him first, maybe cause ive had a few things over fiddled in the past and they did not come back lol!! and for positive social play he does scouts and dog club oh and sailling. He has alot more skill that the non aspie kids around here seriously patience and yeah alot of mess pays off.

Bec - posted on 01/10/2012

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i reckon the more open we are the more the social stigma goes it is not a bad or dirty thing to have a diagnosis of any kind. There are no limits is up to ones own efforts and desires as to how successfull a life one leads. I am aspie and work in a very potentially bitchy industry and I have always been employed or study to advance my careea more. I was told many times I would not cut it and I passed my qualification exams with distinctions I also went to year 12 and quallifed for uni entry. I won't lie from time to time i have found myself out of a job esspecially early on in life as I had a few eccentricitys that at times were missunderstood eg I had to have an understanding of what I was doing in order to do it. was not being a smart ass questioning the boss I am analytical and really wanted to know and understand everything as that was my learning style and helped me to do my best.also at times I would say what I was wannting to say in a way that would have a possable nother meanning that hey I would be oblivious to and find myself in the shit. This might sound like usual stuff but to ellaborate as I do best the stuff I would say would be ....me say trying to fit in and say something that I may have heard earlier that seemed cool as others looked impressed and laughed yet not really suitable to say to a work coleague or I would make the big misstake of sticking up for a staff member whos job was on the line as hey ive known my whole life what its like to feel on the edge.bit of an outsider so I would try to help others in that spot and often get bitten myself. took me a bit more than the average bear to learn all these little silent rules i reckon its at times as hard as dating thats another thing i find a challenge due to all the unspoken rules, dos and dont's etc...The way I got through most of it was a few good friends who accept me for my at times nievity and blunt questions oh and family but I dont know the amount of times Ive gone hey this happened today what do you thik I should have done instead or what did they mean and Ive got a surprissed look and spoken to as if your old enough to deal with that or you what??? response and this made me feel stupid and its not that we are we just grassp things differently and inturperupt things differently to alot of people. My good friends think Im a hoot but Im not really trying to be its just me. same as at school I would do random acts of crazyness I spose and yes on one hand my friends did not get me yet I was popular to my eccentricities were amussing. I kinda like the fact my friends accept me regardless and just go yeap whatever lol!!

Shana - posted on 01/08/2012

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I own a school for children on the Autism Spectrum. I have some older children who notice that the younger children are "different." I explain it to them that we are all working on something! Some of us may have to work on things our whole lives, and that is okay because learning and working only makes us better. I think at an older age it is important that the children know that they "are working on something." It isn't a crutch that way but a knowing of who they are and what they need to focus on. How you chose to give them the vocabulary of a diagnosis, or explanation is your choice as a family.
I believe you don't need to give a stranger out in public an explanation for how your child behaves. Though you do need to explain to close family and friends who will be with your child on a regular basis. This allows these people to do some research and learn how to interact best with your child. We know our Autistic children need to be treated in a different manner then our typical children.
Good Luck! Check out our website: www.AllChildrenAcademics.com

Sharlene - posted on 01/04/2012

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Yes my son known's and understands his has AUTSIM . And so does all his siblings and I make aware to people that my darling son has autsim ,You just explain to people his needs and they will understand that having a child with autsm is hard and challening as well,All the best and it will get easy for you to express yourself about your child as he gets older and you have to face more challengers .

Amy - posted on 01/04/2012

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Hi,
I have a son who is now 14 and is Autistic. I wouldn't really worry about your child knowing they are Autistic or not because with my experience they don't really notice they are different or if they do it is not untill they are older. When it comes to telling people about your son, I always started of with my son is a special needs child, and then if they wanted to engage more I would explain that he is Autistic. For some reason all people know the phrase "special needs" so it is easier that way. Also, I wanted to tell you my son knows he is Autistic but he doesn't care, he has never try to use it as an excuse or anything. Now my son is very high functioning, and he goes to a special school with other kids who have special needs from Autism, to ADHA, so everyone their is special so there is acceptance for him there, that I don't have to worry about with a public school. Unfortunatly to have this piece of mind that my son is doing so well is costs a whole lot of money for the school, but it is worth it in the end. Hope this helps!

Janet - posted on 01/03/2012

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The business cards really do work - arseholes will throw it away, and people who are just misinformed or misguided will actually learn something :)

Annabel - posted on 01/02/2012

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My daughter worked it out for herself ... at the age of 10 despite always knowing she was a little different, she started trying to work out why, I caught her reading development books, looking on the internet yet she never asked me or her dad. At parents evening her teacher informed me she had eloquently talked about the need for young people to be understanding with those that struggle with social interaction and that friendship was the most precious thing in the world, this was when they were proposing which charity to support during charity week, and natually her suggestion was the National Autisitc Society. My daughter is far from typical, she is very high functioning and years ago would have probably been classed as an eccentric loner, quirky and odd, now we know different but I'm still astounded about the insight she has, and whilst her ability to get along with her typical peers is poor so is in a lunchtime programme, during this time she volunteers to work with a more profoundly autistic boy in her mainstream school and she is the only one he ever speaks to. In summery I don't think you should ever hide things from your child, yet there is also no need to "tell" them, as when they are ready they will know.

Tabatha - posted on 01/02/2012

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My son is 5 with ADHD and Asperger's. He doesn't know yet that he is different. I only tell people who are active in his life about his Asperger's and ADHD. When we were at my sons schools little fair he kept trying to push past the other children. I was constantly having to remind him to wait his turn. The person running the booth was looking exasperated so then is when I told her that my son has ADHD and Asperger's and he has trouble with waiting in turn. I also thanked her for her patience and for helping me to teach him to be patient and wait his turn. I bleive in educating those around you a little at a time. I don't try to explain everything about ADHD or Asperger's just the part I am dealing with publicly. If they look interested I try to get them involved with teaching my son then we have all learned something.

Joan - posted on 01/01/2012

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My granddaughter is 6 and she doesn't understand what autism is yet, as far as she is concerned she is normal and every one else is wrong...LOL

Seija - posted on 01/01/2012

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My son has just been diagnosed with aspergers. He is seven and he knows about the diagnosis. I was wondering how parents of aspie kids keep it from them anyway because when we went to the doctor he wanted to know why he needed to see the doctor because he wasn't sick so i explained. He doesn't care and doesn't really know the symptoms as yet except for the difficulty in concentrating. I don't view as a disability, just as who he is, my boy.

Jackie - posted on 12/29/2011

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My son didn't have meltdowns, but his social behavior wasn't age appropriate (ie. Lack of eye contact, inability to respond to questions with clarity, etc). I attributed it to immaturity, but it didn't improve much over the years. Finally, he was diagnosed with Asperger's at age 13. I'm just upfront with people. It is what it is. It explains why he behaves the way he does. My son actually articulates that fact, too. I'd rather people know why his behavior is a little...eccentric, than for them to speculate.

Erin - posted on 12/28/2011

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I let people know if I feel it's necessary. My son is almost 4 and pretty high functioning. One day when we were at the park a very sweet little boy wanted to play tag with him. My son had never been approached with that situation before and didn't know what tag was #1 or how to ask how to play. He has trouble with social situations, very common, and needs to be taught to play, he learns in school. I didn't want the little boys feelings to be hurt by thinking that my son didn't want to play with him. I explained to the boys mother. The little boy was actually in an integrated program as a mentor so we all tried to encourage the tag game and teach my son together. In that situation things went very well. Of course they don't always go that way.

As for meltdowns at this point I don't explain because he's still little and all little ones have tantrums. And anyone who looks at me in judgement I try not to let it bother me, because if they have kids and they want to pretend that theirs is perfect that's their problem. Me and my friend went out to eat one day with my son, depending on his mood he can be very pleasant to bring along. This particular time he was not. And when we left he didn't want to go (transitions can be hard) and had a meltdown right there on the restaurant floor. So I carried him out kicking and screaming while other patrons stared in awe or were laughing. So I turned around and said "and now you all have something to talk about during dinner, don't you?"

Joan - posted on 12/27/2011

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My granddaughter has HFA and I have people every thing but call be a liar out loud. She is about 2 to 3 years behind in her behavior, her speech is that some people can understand what she is saying and people just think she is a naughty child. I have even had 1 woman tell me they my granddaughter can not be autistic. I am to the point that I don't tell people and they can draw any conclusions they want.

Deena - posted on 12/27/2011

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Danielle, My name is Deena and I have an 11 year son with Asperger's. I too was torn and unsure in the beginning who to tell and not to tell. My mother was and still is very negative to me about how I deal with my son, but we have come a long way and he has done so good! I do believe that you do need to let the people who will be around him the most what is going on. There are typical children who act worse than my son, and you obviously don't need an explaination for that other than do discpline! I pray that you will find strength during the days weeks months and years ahead! These children are such a blessing and I have told my son since his diagnosis that he was truly a gift from God and I do see it that way! He will reach people in a way that I never will be able to! Good luck! I know you will do the right thing!

Deena

Jamie - posted on 12/27/2011

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My grandson has HFA and at 6 yrs old still has his good days and bad days, As a proud Grandmother nobody that we encounter on our bad days gets any explaination, if we are in the middle of the mall and he becomes overwhelmed we simply leave or find a quiet place so he can regroup.Some times by playing silly games climbing in and out of the clothes racks etc. we can distract him, his mom rolls her eyes at us grandparents crawling around the department store floor but she gets her shopping done and we had fun. Wishing you Good Days and you're already blessed b/c there are not that many mommys that have the love, patience, understanding to have special babies, that need a gentle hand and 10x big heart as you. ;-D

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