How do you explain ASD to others???

Jennifer - posted on 11/16/2009 ( 25 moms have responded )

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My three year old son was diagnosed with a high-fuctioning ASD in may. I have found sense he started preschool, that many of the other parents and just friends of mine are always asking questions about what is Autisum. It is still a emotional subject for me at times and i have trouble explaining it to them. Whe i do they look more confused than before i started. It is like i'm speaking a different laungage. I know i tell them what is right out of the book, but they don't understand.

I notice that at times they see my son having a melt down, or not enjoying something new in class that the other children are, The most recent event was the Halloween Party. It was out of rotune and different than what he was exspecting. It made him have a melt down. But prior to that he just sat and watched the other kids. He wouldn't join them, nor was he interested in it. I watched the other moms and dads. One of them even asked if it was past nap time. This really upset me, I wanted to yell at her and to grab my son and walk out of there crying. So many people don't understand anything about Autisum. They just think He is a child without mannors.



What do i do? My son isn't the only child in that class with autisum but sometimes i feel so alone with this.

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I usually say something like, it's a pervasive developmental delay, and his brain is wired differently than most kids'. But it's never easy. Good luck!

Sharon - posted on 11/19/2009

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Teri is on the right track. Each year, I put together a "Who is Andrew" folder complete with a picture or two for his teacher and his aides. This contains who Andrew is now, what his current strengths and weaknesses are, what he likes, dislikes, behaviors we are seeing and what we do to counter them. I try to give background on where Andrew was when we started down this road and what we have seen since ANdrew has been known to pull from a vast array of behaviors. I try to set a meeting prior to the start of school so he can meet his teacher and see where he will be in class. Summer programs are handled the same way and this usually helps.

Hope you have a good day---me I am off to get some coffee---from all of my typing mistakes it is clear I need something :-)

Terri - posted on 11/19/2009

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When my son first started Kindergarten, there was a boy in his class with Autism. The mother of this boy attended the parent infomation night armed with infomation that stated what autism is and how it affects her child. She also included reactions here child would have to certain things and how to best interact with the boy. I found this helpful as I could help my child to understand how this boy was different to the rest of the class. It also helped me in the long run as after a few years at school, we changed schools and found ourselves in the opposite position with my son being diagnosed with Aspergers and ADHD in a new school environment. Having a basic knowledge of autism helped be pick up on the situation with my son.

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Cheyenne - posted on 09/01/2013

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I hate to be the person that posts for personal reasons on here, but I'm trying to write a play about autism and I noticed that the way you're all describing your children, is what I need to know, not the medical definitions. If you'd be so kind as to check out my post: http://www.circleofmoms.com/autismasperg... I'd be eternally grateful for your contributions. Or, if you'd prefer, I'm looking for one specific piece of help for one scene in my play. I'm going to use names and one word descriptions that mothers have given me as to what autism means to them. This can be from your perspective, your child's, society's, whatever but for example I received a comment from one mother that said, "saintly", so I'll use her name, (with permission), and her word, as part of the last scene in my play. If you want to just reply to this comment, that'd be equally wonderful. Thank you in advance for your bravery and your love.

Tamara - posted on 11/21/2009

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First and foremost.. its your child, don't explain. They ask say obviously my child is different than yours especially in the way they handle things because my child is autistic. When they ask what is that. I would always say.. I look at babies like eggs.. you crack it in the bowl and then use an egg beater before cooking right? Well my son came out already scrambled so he behaves differently than your child. This generally doesn't get a response other than OH.

Jen - posted on 11/21/2009

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I tell people that my daughter has autism and has a difficult time following directions as a result. If they ask for more information, I tell an adult or teen that she has a neurological disorder that affects her ability to communicate. If a child asks, I tell them that my daughter's brain is different from their brain, and that she isn't shy or mean -- but she has trouble talking to other children.

I get very lonely as a parent, too. But explanations are just that. Don't let ignorance get you down.

Chris - posted on 11/21/2009

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I agree ,dont try to explain autism with the book definitions. My son has Asperger's and it can be so embarassing when we go somewhere and he has his meltdowns or demonstrates his autistic behaviors. I always joke and say I would love to hang a sign on him just so I dont have to explain to people. Some people are curious and understanding and some are just plain ignorant and rude, but that is with anything. It is hard at first but it gets easier to explain.

Petra - posted on 11/21/2009

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some people do like they don't know what autism means,it's hard,I know,sometimes I stay at home with him, because of the way people react at my son, mostly I explain to people that my son has a part in his brain that doesn't work verry well, and mostly they understand,but I hate the way people look at us if my soon does something "strange.Some day's he 's lovely other day's it's hard to keep in contact with him.But I love him very much the way he is,even if it's hard, and if he give me a hugg and kisses me I melt.I'm sorry for my poor Englich it's a long time ago I wrote it.best regarts from belgium petra

Sarah - posted on 11/20/2009

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I just say "he has Autism and he see's the world diffrent to you and i so things that maybe fun for us is sceary for him and he can become over stimulated easy and it scears him".

If they dont understand or give nasty looks/comments i dont bother wasteing my breathe to be honest but if they really do want to understand then ill try and explain more.

Tasha - posted on 11/20/2009

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my daughter has high functing autism and she is diffrent heres my advice dont give up keep on going and never let anyone bring you down a couple years ag when my daughter was 5 all she would wear was pajammas and she wore them every where including school and it was feild day and this little boy started making fun of her ad pointing her out and she had a melt down and the boys mom started saying stuff and laughing till i was in tears but i went up to her and i lost my cool but i did explain to her and she brushed it off but you know she has to carry that gulit not me and i haven't quit yet do you have a teeacch in your area

Tasha - posted on 11/20/2009

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i know how you feel . its really hard to explain and it breaks my heart to see people get mad and give me evil looks because of my child and i look around and people are so rude i wish the world understood

Nina - posted on 11/20/2009

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ok i am nina gibson from ky.... i am not fairly new but i am new to autism my son is 4 he was diagnosed at 2 and a half..... now i see all these replys and im thinking you guys really know what u are talking about my son has been in preschool/ headstart since 3 years old this is his last year in preschool he has progressed from shuting his self down completely at 18 months old he progressed just fine till then next thing i know is at two years old we couldnt get him to even talk or play except for saying momma and dada well now he knows all his abc 1 thru 29 1 thru 10 in spanish all his colors and shapes i mean once he was diagnosed and worked with in his therapies and school it started getting a lil easier for us to see his progress. we have had our fair share of meldowns and stares and well what is autism he is just not diseplined u know what im saying but my point here is even my family has told me autism is where they rock back and forth and dont communicate at all with others you just need to take your steps one at a time and if someone stares or says a word about him just smile and walk on thats all we can do unless you tell them to look up autism online on google and it explains it all...... ohh by the way my family has been starting to come along and even understands he has a disorder it has nothing to with disepline....:)

Liz - posted on 11/20/2009

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It's hard enough to deal with ASD without having to fend off comments made by unthinking folks! If you have the stomach for it, do what I did when my little one was small (and what I remind myself when I do speech therapy in a behavior classroom). I just look them in the eye and say matter of factly "Oh, didn't you know? He's brain-damaged." Usually, that is enough to stop the comments, but if they are really interested, you can go into the whole amygdala / neurotransmittor explanation. Watch their eyes glaze over. It's hard when your child's disability is not written on his face. Everyone gives slack to the little guys with Down Syndrome. My Asperger's daughter is now 28 and pretty well socialized. Awareness today is a million miles better than it was when she was a toddler. They were still trying to push parents into therapy at that time, thinking that we had "done this" to our kids. Nevertheless, it was my daughter that inspired me to study Communication Disorders and eventually work in the field.

Laura - posted on 11/20/2009

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I so understand! I used to be hurt by peoples' looks and comments, but now I am alert to those around Lloyd and tell them frankly that he is autistic. This opens the door to understanding right away. Some people ask me questions and others just nod in a sympathetic way. The sympathy used to bother me, but I realize now that I deserve sympathy...this is hard work! My son was diagnosed high-functioning Autistic at 5. I was devasted. In my mind I'd decided that he was just delayed and would eventually catch up to the other children. When he was three, I started him in the pre-school my older two daughters had attended. I knew the director of the school well. I expressed my concerns about Lloyd to her and told her I was thinking to wait another year before starting him, but she told me to send him. The first week of school she told me to contact the Early Intervention Unit in my county. Best advice. This put me in the right direction. The IU evaluated Lloyd and (without a diagnosis) started speech therapy. Over the course of the next couple of years, Lloyd also received occupatonal therapy and developmental therapy and is still receiving speech, occupational and social skills therapy now - all free through the Chester County IU. Lloyd attended a Chester County IU pre-school program just for special children. This was huge (and FREE)! The specially designed and highly structured program was extremely helpful in preparing Lloyd for kindergarten. The program your child is in now does not sound like the right place for them. Your IU can help you. Before starting Kindergarten the IU evaluated Lloyd and that is when we received the diagnosis. I'm an emotional person (aren't most moms?) and it hit me hard. The reality that this was not a delay and would affect him and us all our lives crushed me. I was told that the diagnosis, the "label", was a good thing. It would help Lloyd receive the help he needed. They were right. A team at our school was put together and they developed a plan (IEP - Individual Education Plan) and when Lloyd started school they were ready for him. Lloyd is now 7 and attends our public elementary school. Last year he had an aide by his side all day every day. She has become my angel at school with Lloyd. He is very smart academically, but struggles with social interaction and communication. So far, so good. We learn to take it a day at a time.

My advice to you is contact the IU in your county or ask your elementary school to direct you to them. The earlier you get help the better.

A family friend told me once, "The problem with Lloyd is not really a problem for him...it's all he's ever known. The problem is in you. Let it go. He's still your son and you are not going to love him any less. Be the wonderful mother you are and he will thrive." My prayers are with you and all the moms whose lives are changed by these special little people. By example, we educate those around us in tolerance, compassion, patience, and love. Maybe that's why they are here in such great numbers.

Amanda - posted on 11/20/2009

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You are not alone, this site is proof that there are so many of us out there! And the great thing is most mothers of a child with autism have learnt such compassion and acceptance, they will not let you go it alone!
I had a lot of trouble understanding the sensory difficulties children with autism have, which is what makes them have meltdowns. We focus on maybe a couple of things at a time, children with autism try to focus on everything around them, so when your son is at preschool he probably goes into sensory overload, he is listening to every child and adult in the room speak, laugh and cry at the same time, while listening to toys banging and beeping and and chairs move, and pencils write and probably traffic outside, as well as trying to watch all these things while smelling a pooey nappy, the plastic from the toys, the wood from the bookcases and lunch. Now imagine trying to deal with all that, it's no wonder our children become hyper-active!
At the end of the day most of these people will never fully understand autism, and it is a shame, my son is almost four and was also diagnosed with HFA in May, and I'm finding the more I come to terms with it and understand and see the good aspects of autism, the more open and confident I am to speak to people about it. As for understanding the emotional side of what it is like to have a child with autism, I have found a story on the internet, you may be familiar with called welcome to holland, and it is the best way you can possible describe it to anyone, I will send it to you in a msg if you like.
Goodluck and I hope it gets easier for you.

Amanda.

Paulal - posted on 11/20/2009

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Jennifer because Autism is a hidden disability people look at a child and judge. My advice would be to join a support group in your area. I know that it helped me, the friendship of the other parents gave me the strength to keep fighting for my son. The other thing I found was that I got different tips from other parents of what had worked with thier children. I put these into practice and found that some worked. I also got great help in getting the help needed to get my son help in school and to help educate the parents of children who made my sons life hell by explaining what disability my son had and how it affected him. Autism is a new disability which little is known about but keep your head up and keep calm. Please keep fighting for your son it does get easier to live with autism but it takes alot of patience and understanding and routine placing for day to day life. Have a meeting with his teacher and as her to help with the other parents by informing them of your sons problems or contact your local autism authority and ask them for help with some liturature. keep positive for you and your sons sake.

Kristy - posted on 11/19/2009

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When I am confronted with questions, I tell people that my daughter learns at a much slower pace, she is 8 but functions as a 4 year old. I also try to break it down into small simple terms. I am a preschool teacher and the mother of a mildly autistic daughter.
You are not alone, it can be difficult. Be sure to tell people that its not thatyour child don't have mannors, its just they learn and function at a different pace.

Julie - posted on 11/19/2009

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I know it is hard to decide whether to tell and who to tell. My son has Aspergers and we haven't told his peers. however, we tell adults who are responsible for him during the day and others who can ease him through tough times if they know his situation. Ask yourself, ould you tell people if your child had a food allergy, was diabetic, etc. ASD is a medical disability described in the DSM-IV.



I have used books like ASD A to Z to help others understand. Autism Speaks and other groups have a great selection of books. There are books for alomost every audience (school age, preschool, adults, teachers, etc).



Good luck.

Sharon - posted on 11/18/2009

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I have been there and done that and am back full circle again. My son Andrew was diagnosed PDDNOS when he was 3. He had maybe 10-15 words and the worst meltdowns that could happen anytime and anywhere with little to no warning. Andrew was also diagnosed with developmental apraxia last year at age 5 and his speech delay has been tough to work with. I very much understand how it feels to be lonely in a crowd of moms as so few go through what we do on a daily basis. I have been told I am an awful parent, that my son is a brat and many other pleasant sentiments: even by family members. I have missed many meals with my family as I had to take him out of the restaurant and wait in the car. Please hang in there. If someone really wants to know what you go through, refer them to Autism Speaks. They are a great resource and if they want to walk a mile in my shoes I suggest they watch the video clip called Autism Every Day on the Autism Speaks website. It brings me to tears: it hits so close to home. When I explain Andrew's situaiton I try to keep it simple. I simply tell people that his brain processes things differently then theirs does. There is almost a disconnect between his expressive and receptive language skills that causes him to lose his patience and scream or flop on the floor. For adults or older children, I ask them to imagine being in a room with 99 other people and trying to have a converstaion with one person. Most people can shut out or turn down the volume of those other 98 people, but my son hasn't learned to build those walls: he is bombarded by every site, sound, every breeze or odor around. When he takes down time, I tell them it is his way of re-setting what walls he has in a world he can control. I Temple Grandin said that Autism is something we live with, it does not define who we are. That goes for Andrew as well...he deals with autism and all of it's challenges each and everyday. My job is to try to help him develop the tools to adapt to life in the world as we know it. Many nights I go to bed thinking I have lost the battle of the day, but each day brings new challenges and new joys. I tell myself that in the long run,we will overcome this challenge of this diagnosis and that he will have many of the opportunites that a typical child does. I have learned to look at the glass half full and have found more patience than I ever imagined...I just wish I could reach into it every day. Ask your school if they have a behavior specialist they can refer you to. If you are in the states, many of the public schools have acess to one and they can help design a plan based on which methos reaches your child best. Floor-time, ABA, etc. That is what got us started down the road to coping and helping him integrate. I wish you well and would be happy to help in any way that I can. This is a tough road, but realizing that you are not alone makes taking those steps a little easier.

Sharon in Plymouth

Joyce - posted on 11/18/2009

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I have run into this myself. I try to educate people on autism when they ask. Some people understand and some don't. My best advice to you is to keep your head up and don't let it bother you. Always remember that there are people who know exactly what you are going through. When I am feeling down, I remember that my daughter loves me and that she will prevail in everything she does. We are blessed with these children who can give us a whole new perspective on life. I believe through dedication and love we can all overcome the hardships that come with this disorder. I know my daughter has shown me my path in life. I am here if you ever need anything. Prayers and love to you and your family!

Jan - posted on 11/18/2009

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Hi everyone. I really feel for you Jen... I am having a really hard time at the moment with my son. He was diagnosed with ASD in june and has just gone into reception class (age 4 - 5). He has severe melt downs in class because he cannot understand what the teacher is saying to him and the class size is far too big. He has started attacking other pupils and trying to hurt himself when he is angry or frustrated. Now as he is the only child in the class with ASD, and the teacher has never taught a child with ASD, he is not getting the right help.... his teacher actually said to me 2 weeks ago that she doesn't think his behaviour is anything to do with autism, he's just a naughty boy!! I have heard the other mums making sly remarks because their children have obviously told them that my son has done something to them. I end up walking away in tears feeling like no one understands or cares... what I want to do is grab these mums and tell them my son has ASD and is sturggling every day just to cope with day to day things that their children take for granted!! I really dont know what to do!! I have recently had some corespondance from the local aurthority giving details of help he may be entitled to in school but while i am waiting I am going slowly crazy!! Sorry to ramble on and on but no one understands what we are going through at the moment
Jan xxx

Tiffany - posted on 11/17/2009

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I am new to all this, But I can atleast tell you i know what u r going thru when people think ur kid is just out of control. My son had to go to kennedy krieger center in jan. He has not been diagnosed, totally. but me and the pediatrician know he has this problem. I love my peds. And I am not looking forward to goin all the way to baltimore, but I will learn alot. The best thing I can tell you is... dont try to quote from a book. Like the other lady said, try to joke it off. It will make u and them feel better about it. He is not dumb, he is just in need of extra loving care!! I will pray for you, and all of you. I will need advice soon too im sure. Is ur husband involved??

Jennifer - posted on 11/17/2009

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Thank you for your help. I know I need to tell people but it is very hard when all they want to do is judge me. Sometimes i feel so isolated from the other moms. The one other mom that has a child with ASD is quiet like me, we say hi and i know she understands as i do. But her child has a more sever case of ASD than mine. and she seems so busy with her. I know i just need to step back and look at the bigger picture. I mean not even a year ago could i leave Erick at school by himself without a major meltdown and then shutdown! And he opens the gate for me know and waves bye before we even signed him in. He is reconizing his letters and numbers now. I thank his dr for that. helping me find a way to keep his attition so he could learn this.

Sheila - posted on 11/17/2009

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I am very upfront with just saying, he has autism, so you might be surprised by some of his behaviours. I have had people respond with, oh, that's okay. I then make a joke and say, maybe for you, but I'm having a hard time right now...and then I laugh....they tend to laugh too, but they get the message that this isn't easy.

I am very fortunate in that we live in a smaller city and I take my son to the same stores, etc..The store associates tend to be the same ones, so they have been able to see his progress. Just the other day, while buying pants, my son was dancing to the music in the store. The clerk commented, I remember when he couldn't come in with earphones, he's really made progress. To buy clothes before, the clerks would literally come to the doorway, ask what we were looking for! We also have gone to the same drop in play centre.

My point is (and although I ramble, I usually have one! LOL) Develop your community. Let people get to know your child as someone living with autism. If people ask, tell them it is a neurological disorder...not a social disorder..it is a medical condition that we live with every day.

If someone truly doesn't understand, and they are looking to learn, embrace that moment...I KNOW it is hard, but in the long run, it makes your life easier if more people understand your child.

As well, when my son plays apart (which is often typical of him) and if there are a group of moms or dads, I will initiate and say, "you know, I am so proud of Scott. He's living with autism and a year ago, we couldn't even have been in this room, but now he's able to play along side the other kids." Let them know you know there is something different, and it relaxes everyone.

Labels occur when people are ignorant of the situation.

Understanding occurs when people are given knowledge.

Good luck!

Sheila.

Amanda - posted on 11/17/2009

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You are among people here that understand. My son has high functioning Aspergers. Sometimes other people are just not willing to understand. I used to take my son out to play in public areas like swing parks etc. Very ignorant people whose children had no manners at all would come up to me and say "Is there something wrong with your child?" I bluntly said yes. There is no excuse for anyone in this world not to understand what autism is and how it affects their and your daily life. Tell them to go to a library or look up autism on the net. If they are trully interested they wil get a better understanding of what Autism means.If you feel the need to explain tell them briefly that Autism for your child means that they think differently, look differently at situations. I have experienced meltdowns with my boy. I feel for you it can be so difficult at times. As you said your son is not the only child in his class with autism, have you asked the other moms with autistic children how they handle this situation? Unfortunately you will get some ignorant people and they are best ignored. Maybe ask the school to have a discussion about Autism and what it means to the child and to the parents. Do you have a support network for your child at school , discuss the situation with them. They may be able to provide leaflets of some kind that will explain Autism. Never feel alone I come on Circle of Moms and have had my eyes opened to the pressure mums and dads are put under ,and there is always someone on here willing to help.

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