whats the worst thing about having a child with asd

Cheryl - posted on 01/22/2012 ( 34 moms have responded )

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i dont mean behaviour wise unless you want to share, i mean other peoples reactions to our little darlings.



im starting this because we went for a lovely day trip today and my oldest got a little bit over excited so in his usual fashion he ran around on tiptoes screaming and hand flapping, i cant stand the way other people stare at him when he gets going it makes me want to scream at them.

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Michelle - posted on 01/23/2012

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People who will say "she doesn't SEEM autistic" implying, what unless she's running in circles flapping and screaming constantly everything else is dismissed? Hi, you don't live here 24/7 like we do.

Second is when those in authority (like principals, teachers) at first dismiss her issues, then use those very same issues against her. My daughter has speech issues, yet really wants to please so you can basically bully her into agreeing with whatever you want because she isn't equipped on how to properly stand up for herself. It is a skill we're working on for the world but those who seem to ignore it the most are those she should otherwise be able to go to for help. It makes me SCREAM!

Danielle - posted on 01/25/2012

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I would agree that the startled looks from strangers, and even friends when they see some reactions.



The inability to do things outside the house, and the things we attempt as a family is a constant struggle. Trying to curb tantrums to avoid the glares from strangers. Basically having to limit the events that should be fun, but ends up more work than its worth. ( But still everyday we still try).



My son is three and isn't very verbal. He will often tantrum, and hit himself when frustrated. He will tantrum when people approach him, recite books and movies, and will often stim. A lot of people don't know how to react, even after I've told them his condition.

I actually feel like the reactions have gotten worse since telling some people... l feel they are more analytical to his reactions, and because they know he is Autistic, it makes it worse somehow because its no longer a discipline issue, but a mental one.



I would also have to say that it is also frustrating when people minimize his condition. We often get from friends

(with normally developing children, no less) "Well he seems normal enough" or "I'm sure its something he'll grow out of".. and of course they know nothing of Autism, and it seems like they don't appreciate how easy it is to just say something like that. Basically no comprehension of everyday life with an Autistic child.



Another issue I've been faced with is family. It took them over a year, and an official diagnosis to consider that something was wrong with my son. They thought he was not being disciplined enough and would occasionally say that he needs a good spanking, and that "he doesn't fear us" enough.



I love my son to death, and I would never even consider changing his condition. I just sometimes wish it would be easier. I'm just waiting for that one "win"!

Tracy - posted on 02/25/2012

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I had someone the other day who was so loud and being argumentative the other day. My two boys are on the spectrum either with sensory or in a stressful situation as well as both having ADHD. It can be very hard. I finally had to go over to the women and let her know she was upsetting my children. She wanted to get nasty but when I mentioned my two had Autism, she stopped immediately and realized she was being rude and insensitive. If you can get support through agencies in your state or town for parents with children on the spectrum, it will help learn how to cope. I just recently found PPAL ( I live in MA) and it has helped so much. Don't be afraid to let people know what you are dealing with.

Michelle - posted on 02/13/2012

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I'm a mother of 6 and all 4 of my sons have ASD. Whenever I take them out in public I get rude comments such as, "control your child, what kind of parent are you to have a child act like that", etc...IF I stop to explain their behaviour some people will actually listen or some look at me like I've made the whole thing up. I think the ignorance of people is the worst thing that us parents and the child have to deal with.

Melody - posted on 01/25/2012

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I think I always handled the publics stares and comments fine. I have a strong personality, and just didnt take it from anyone. If they said to me,"have you ever tried", I would say," I have 3 adult children who are well adjusted and doing very well in their fields. I know how to raise a child. My daughter has autism. If you think you have an answer for how to deal with this I'd be happy for you to take her for the weekend, and then let me know how that went for you" That stopped them in their tracks.



Another thing that bothered me was that the "experts" sometimes didnt get it. They would look at her list of things to work on, and have them all checked off. I would have to explain to them. When she went to the therapy building, and went into a room week after week, she learned a certain behavior was expected, at therapy, in that room. Most times, the behavior didnt go out of the building with her. I would have to tell them, She only does that consistantly here, with you... Not until I had a therapist who took her out into the public, into different settings, did the behaviors begin to be consistant.

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Stacy - posted on 09/14/2012

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The worst thing for me..is fearing a pyschotic break where my child never comes back. We have been thru 2 crisises now..one at age 6.one just recently, he is now 13..the other people don't bother me anymore..what is important is that my child stays stablized in this and his world..losing him completely to his own world is the worst thing that could. happen..flap, spin, dance with your child..watch them and laugh with them..be happy with them

Cheryl - posted on 09/12/2012

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i forgot i had started this thread since my last post we have really been through the wringer big time we lost some supposedly good friends at the end of last year due to his behaviour on holiday, the worst part of it was i explained all his behavious to them before we even booked it but what the hell its their problem not ours.



hes moved up in nursery and even tho he is still in the same building they cant see any problems again im getting so fed up of fighting now its been 3 years and we are no closer to getting a diagnosis, the specialist has decided hes got sensory processing disorder now so we are waiting for the test for that and to top it all off my youngest is under testing for that many things i feel like my head is spinning.



i found the best thing ever for the lovly people that stare tho i look straight at them and laugh its so much easier than getting mad especially since i now have 2 "naughty" little boys

Sophia - posted on 09/09/2012

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you know what thats on them.... next time you ask him out loud are you having a good time. So what .... And say thats my baby give him a hug and kiss hold his hand .... calm yourself then him.

Sharee - posted on 02/25/2012

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i am in tears after reading all of the above comments. my nearly 7 year old son is the oldest of my 4 children, he has just been refferred to specialists to be assessed for adhd and autism. i , finally can completly understand where you ladies are coming from. i say finally because everybody around me has "normal" children and i have "the naughty one". thats what gets me the most, my son being told hes naughty or people thinking he is just a naughty, aggressive, rude little boy that wont even look you in the eye when you talk to him. the judgemental looks and comments i get when he is having a meltdown or even just when he is talking, he likes to use lots of sound effects to explain things instead of words (i love it). and also i really do think that nobody can truely understand what an autistic child is like unless you have your very own special edition :) i love my son with all of my heart and i wouldnt have him any other way, but i do wish that other people would take the time to get to know him before they judge him. thankyou all so much for sharing your stories, it has really helped me to see that i am not the only one that is going through this, and most days, i really do feel so lonely because none of my friends or family seem to understand. whenever it is talked about i get the "he will grow out of it" and "he's not that bad, just needs to be parented abit better" all the responses that it seems all of you have had aswell. the one thing i do say to family and friends that have children the same age as mine, when they say hes not autistic im like yeah does your child run around humming and flapping their arms for about 30mins because they couldnt have peanut butter on their sandwhich and that is all they will eat on a sandwhich, when your child hears the word needle do they run and bang their head on what ever is around over and over because they dont like it, when your child hears swearing they sit in the featal position with their hands over their ears rocking, when your child gets home from school they dont ask how your day was, my son will ask me how my day was about 15 times before he goes to bed. no your right, hes completly "normal" nothing different about him. lol and thats only naming a couple of things. like i said my son has not been diagnosed but i can still relate to pretty much every comment on here as i have been in the same position.

Emily - posted on 02/24/2012

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The stares are horrible! Those are the people have no idea what it's like to have a child with a developmental disability. Unfortunately people are so ignorant of the behavior associated with it. I ran into this with my daughters preschool. The teacher stood there and told me she "doesn't believe in ADHD, ODD and even lots of kids that have been diagnosed with High Functioning Autism, and that it's all just bad behavior due to bad parenting".... I could of smacked her right then and there! And this coming from a preschool teacher with 20 years in the field! I pulled my daughter out and we are working with support from our community Supported Child Development to teach her social skills.... We are all much happier.... Goes to show how ignorant people can be, even ones who you would think would be a little more educated in child development.

Katherine - posted on 02/23/2012

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Oh I've been through the wringer with other people and how they act concerning my lil autistic guy. I have no problem addressing them about it :). They are the ones who end up looking like asses for doing that to a disabled child. I buy him t-shirts with funny sayings about autism too. Kind of nips it in the bud. Take a look at my pics for an example.

Christy - posted on 02/21/2012

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Ignorance is bliss and some people think they know and don't really care what the situation is. It's sad :(

Esperanza - posted on 02/18/2012

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its a really hard thing to deal with, and o man i admire the will power it took n ot to just knock that lady out. im always being told i need to think before i act but o man i just dont even know what to say. that makes me so angry that that lady did that to you and your child boy o boy i get in alot of peoples faces and chances therapist says im supposed to ignore the talk because chance doesnt understand it and if i point it out in front of people he will start to feel different and self conciouse. i dont drive or at least i dont have a car so im usually at home if he goes and spend s time with his dad and i dont have many freinds cause they couldnt hand le being around us so sometimes i feel really sad and alone and wish i had someone to talk to you know. i also worry i use the autism as a crutch and dont push him as hard as i should and hes very bright i know that but im at a loss with punishment cause im not sure how much he understands of what imn saying cause he wont really look at me to watch my lips and hes got bad adhd his focus is really off. im not a fan of medicine but i figure if i can get the adhd under control then maybe i can teach him the valuable stuff that needs to be taught the only thing is ritlin didnt work and they have nothing else he can try till he can swallow a pill. most my doctors want me to put him on aggression medicine because there a fraid of what he can do others. and hes seriously hurt kids before and it breaks my heart and makes me feel sick because i have to make up these excuses or lies so they dont know the truth because hes ev erything to me and i dont wanna lose him. and im so scared because as he gets older hes gonna get stronger and i dont know how to reach him this way. i cant leave him with nobody because im afraid someone would run out of patience and hurt him and he can t tell me. everyone tells me take it a one day a t a time but how can i when if i dont do the right things it could impact his life forever. i dont know why hes so angry all the time. i dont hit him and i do nothing but love him so much. i didnt no that having a child that you love so much could break your heart so completely. but if i had to do it all again i would still have him regardless of knowing how things would turn out. but i refuse to lose my little boy and i know that love just has to be enough to change things. his dad takes him once in a while or when i cant like now that im on crutches he s had him for a couple weeks but theres no rules or boundaries down there so when he comes back its like i have to start all over from scrath:( chance has come along way in the year that hes been with me and since weve had him in all these classes. he used to not talk at all and his meltdown s would last longer. christina is aba therapist is the greatest she has really helped out alot im so thankful that she came into our lives.they want me to teach him sign and do these picture things to let him no about changes. and im struggling with it because i know chance is smart and catches on quick so he wont need them and plus kids are cruel and i dont want to give them more amunition to tease him with and its so hard

because like you said chance also looks very normal and is very handsome he could easily have the ladies but i dont know if that will ever happen and it makes me sad.everytime i take him to appointments with me and he acts up people start acting like im a bad parent or something its so maddening. people tell me they dont think they could do and go through what i am. i will never get tired of my son no matter how bad he acts. i will never abandon my son. sometimes i need a break yea who doesnt you know but all my life people have given up on me because im too hard to handle and im not gonna let my son feel the same way because i love him and if i have to be alone forever with him by my side im ready for it because bottom line is ive never loved someone so much and everytime he does sweet little things it just reminds me that there is so much more there. has your daughter had an eeg or mri? what kind of things does she do? does she get aggressive

Shari - posted on 02/18/2012

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I understand exactly what you mean. I have a 10 year old Autistic daughter, my boyfriend and I decided to go to the movies one time to see a musical Disney movie with her. she got so happy to hear music so she started to sing and dance. She was not louder than the movie and she was dancing on our side not bothering anyone. But a older Lady come running down and started screaming at my child. I froze because all I wanted to do was hurt the lady. My boyfriend looked at me and said calm down I'll take care of this. He walked to the lady and spoke to her, I'm not sure what he told her but she came back down ans apologized to both my daughter and me. After the movie was over she came back to me and said I didn't know I'm sorry. What got me upset about the entire night was that she had the nerves to scream at my daughter instead of talking to me or my boyfriend.

Esperanza - posted on 02/18/2012

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i no how you feel, it breaks my heart everytime. people will laugh and point at chance.when i got him baptised he was everywhere and i had a hard time controlling him and the ladies around me made a comment and said well maybe when hes baptised he will be a good little boy with jesus in his life. ive never gone back to that church and refuse to be around people like that. sure ive lost freinds and familly over the way chance gets and hes unnaturally strong an d agressive and very destructive but you know the few moments i get when i can hold him its like heaven for me it makes everything worth it. one time i bought him to the clinic with me when i was real sic and im in a boot and on crutches so i can only be so fast and he was makin me run everywhere after him and this guy with his 2 kids made a comment to his children that chance was just a naughty misbehaving boy and that he was glad his kids werent like that. well i got in his face and told him he outta be ashamed that my boy had autism and how dare he make comments like that when he knows nothing of the situation and such it shut him right up and everybody just stared but i was really mad at that point his kids later on came up and wanted to interact with chance much to the dads dissaproval. its a long lonely road but no matter how tough things get one thing remains the same we are there voice because they are too young we are there advocates and protectors the only thing that stand between them and the rest of the world. you are gonna have to fight doctors and schools and all sorts of people which sucks because u should be on the same team but you are gonna have to because noone knows what your child needs more than the parent. i hate fighting everybody its exhausting but they would like to skip out on services if you let them so you have to trust in urself and your child and you can get through this

Amy - posted on 02/16/2012

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I have 3 children ages 8, 6.5, & 4 yrs, and all with speech & language disorders. My 8 yr old son and 6.5 yr old daughter also have other overllaping developmental disorders to make it a bit difficult to say the least. My 6.5 yr old is an ASD child and not many ppl understand it. Especially the school teachers it seems. She was diagnosed last year with Sensory Processing Disorder which in turn is part of the Autism Spectrum. Outsiders don't understand perhaps because he/she hasn't been in that type of situation or around it but don't be to hard on yourself. In my world the way my children were created are in my eyes "Normal" for this is all I know. I don't know what the average developing child is like on any aspect to be honest and I'm ok with it. Talking to ones you know to get out of the frustration helps. I hate to say but I find myself more comfortable usually around ppl that have a special needs child no matter how light or sever the childs issue may be.My daughter still chews on things (although she has a chewelry necklace), she doesn't focus on you when being spoken to or she to you, has to have instructions repeated consistantly as well as visual reminders just to say a few. You are your childrens voice to be heard and the only one to stand up for them and care for them the best way you know how. Best of luck to you and your family. God bless.

Annette - posted on 02/11/2012

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Those people who look at my sons and say, "but they/he look(s) so normal..." The ignorance totally annoys me.



Like your daughter, my sons also get bullied into agreement. So early on I taught them that they are not allowed to agree to anything they don't understand, and that they are prohibited from signing any kind of agreement or document someone puts under their noses. That has helped a lot. When they respond, "you'll have to talk to my mom first," the situation usually changes, but when it's legitimate, I get a phone call and clarify the situation then give my child the permission or choice (if it's an option).

Cheryl - posted on 02/08/2012

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thank you hun. i think even his nursery teachers have started to notice but after denying it for almost a year i think they are trying to save face now

Julie - posted on 02/08/2012

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I've found that a lot too. The people who do actually know and understand at least some of the difficulties, etc, aren't "specialists" at all, but generally people who just take the trouble to try harder to get to know children and work out what's going on and then work with them rather than against them. I wish you all the luck in the world. x

Cheryl - posted on 02/08/2012

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i havnt really been on since my last post so thanks for all the replys, i am feeling a bit better at the moment as the last post was made on the date they said no its behaviour, im still not sure if its a good thing or not but at least they can see hes having problems.



round 2 kicked of with a bang tho, i have told them i know that the diagnosis is coming now i am just waiting for them to catch up with what i allredy know

@ julie the hv said there was nothing wrong with my son he was 2 advanced, we are now on our second child development psycologist as the first one was a compleate ideot, and the latest one was a speech therapist that is the one who actually refers you to the proper specialists.



the people that can see my sons problems far outweigh the ones who cant, but their oppinions dont count as they are not in the field

Connie - posted on 02/05/2012

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WHERE CAN YOU GET THE AUTISM AWARENESS CARDS? THAT MIGHT EASE THE EXPLANATION FOR THE RECEIVER AND THE SENDER!! I assume they have a basic autism spectrum description too? thanks for your help. And good luck to all of us regardless of our child's age and severity on the spectrum

Tam - posted on 01/31/2012

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My fourth son Ethan has ADHD ODD & Aspergers, I tend to get mixed reactions from people who dont know him & dont know how to respond to his bluntness. He is a "Call a spade a spade" type of kid. Says it how it is..you know...out of the mouths of babes & all that,well at 12 it isnt cutesie anymore I dare say & it offends most people. I get the impression that I am a bad mother & I cannot control the behaviour of my own child. My brother sufferd brain damage at birth & therefore he has his difficulties as well. Sometimes you just want to stop & say...hey get over it!, Nobody's perfect & Im sure if more people were accepting of all special needs kids the world would be a fairer place to live in :)

Julie - posted on 01/31/2012

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I'm right with you on the family thing. My mother-in-law and her two daughters were constantly undermining my decisions on how to deal with various situations with our son, especially in terms of taking him out of situations which were too distressing for him and I would get the "taking him home now won't do him any good" lecture - one particular incident was when an aunt and her three kids came to visit, we hadn't seen them for about a year and the kids walked through the door and completely ignored my son who had plucked up enough courage to stand there to greet them - practically unheard of - not even a hello from any of them and he was absolutely devastated, upset and angry, quite rightly so in my opinion so I wanted to take him home because my husband then got angry and made a comment which was immediately slammed down by mother-in-law and it was all flaring up and not good for my son at all, and that's when I got the "taking him home now will do him no good" response from all knowing mother-in-law who has never bothered trying to find out anything about the condition and just thinks it's bad parenting on our part, not enough discipline, blah, blah, blah. It ended in a huge fight and me being thrown out of mother-in-law's house! Great for our son - NOT. This sounds harsh but I find it very difficult to forgive them for that day. However, I don't care what anything thinks anymore. I know my child and I know what's best, I've taken loads of advice from a lovely lady at CAMHS and she basically told me that I'd been doing everything right and just had to ignore them. You have to go on your instincts on a lot of these things because although coping mechanisms can be taught, it takes a long, long time, won't happen overnight, and so they will still need taking out of situations which are distressing. Everyone else seems to think they know better than you and frankly that's so insulting. Also, if strangers choose to be rude about your child's behaviour then they're not very good people are they? There is far too little tolerance in this World for people who don't fit the "stereotype" or don't appear "normal" in their behaviour or physical appearance. I can't be doing with it anymore. As for home schooling, it works for my son so why should I care what my family think?

Sarah - posted on 01/31/2012

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Honestly, I just stare right back at them. They will usually notice and figure out that they were staring and being rude. That has done the trick for me every time!



I think dealing with other people is one of the most difficult things in our situation. Their disability does not always show physically so people don't understand that it's real. I have had trouble with family members who think they have all the answers and I have had to flat out tell them that they need to trust me and respect me. Trust that I know what I'm doing and respect the descisions that I make in regard to parenting. I'm a capable person, I do my homework and I'm prepared to inform anyone about my daughter and our struggles. I get mixed reactions from people when I explain things to them. Some are very open and understanding and others just think that I don't discipline enough. I have learned and told my family that I just don't care about their opinions. I know that sounds harsh, but I just can't care about that. Everyone seems to think that they have the right answer. If I listened to all of that, I would go crazy! It's not that I'm not open to advice, it's just that I will choose what advice I want to listen to and what advice to ignore. It has to be that way otherwise I would constantly be second guessing my decisions. This is a tough thing to deal with and I applaud all parents who stay strong and are advocates for their children!

Julie - posted on 01/31/2012

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What a nightmare. I don't know why we bother with any of these so called "specialists". Like you say, you know your child better than anyone else and unless they live with you 24/7 how can they possibly make any kind of "diagnosis". My son will hold eye contact with me, his dad and a few other very close family members, or if he trusts someone implicitly and therefore feels comfortable being himself, but otherwise it's not there. He wants to be sociable but doesn't understand "the rules" and what's "acceptable", he speaks as he finds and can come across as incredibly rude and offensive, he calls us names and hits us, but we know it's all because of his frustrations over not understanding the world around him and not being equipped to better express his feelings at the moment (he's just 10). Family members are still critical of his behaviour, and we've come in for no end for flack for taking the decision to teach him at home rather than make him go to school which he finds unbearable for so many reasons. We do get looks when we're out and about if anything upsets him and he starts having a meltdown, which can happen really quickly, too quickly for us to "manage" it effectively, but we've got used to it now and just ignore it. We know why he's behaving the way he is and it's nobody else's business. We know our children best so how dare anyone else, "specialist" or not, criticise and tell us we don't know what we're talking about, that we're bad parents, that it's our fault, we should have let people babysit him more and then he wouldn't have the problems he has, that our child has virtually zero resilience, etc, etc (yes, I've had all of that and more!) Good luck with the next part of your battle to get your child the help they need but if it was me, I'd be finding another "specialist". x

Julie - posted on 01/31/2012

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You should just tell them it's rude to stare! I'd definitely draw attention to them if I could and have done so in the past. They soon stop! We had a negative reaction to our son's behaviour in a play area when on holiday in Australia and I just said to my husband in a really loud voice so the "offender" could hear "It's amazing how people's attitudes change when they know there's a reason for a child's behaviour and that he's not just being naughty" and the "offender" couldn't change his face and attitude quickly enough lol!

Tammy - posted on 01/26/2012

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I try not to care what other peoples reactions are. Sometimes my Aspie son will come out with something that if you didnt know him would probably think he was this little devil child. For example i took the kids to a game shop i had paid for his game and was trying to pay for my other sons game who has ADHD and my Aspie son needed to go to the toilet i said to him "let me pay for this and ill take u to the toilet" his reaction was "well what should i do piss on the games" the lady behind me was in total shock and i just said "seth you knw thats not the appropriate thing to say" and walked out all calm. My son is 4 and had no expression on his face where most kids would be scared cause the know they are going to get into trouble.

Cheryl - posted on 01/24/2012

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well today i have really found out the worst thing, the specialists cant see it at all and think its just behaviour problems so are refering him for a behaviour course.



they dont see him 24 7 like i do they dont see how much difficulty he has with things yet seem to think they know him better than me, and the best one he hasnt got the triad of imparments because he wants to be social and can communicate and hold eye contact eeeerrrrrrr i thought that was called aspergers.



i really hoped the fight would be over but i guess its just time for another round

Gail - posted on 01/24/2012

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My son has just turned 14yrs old recently and I totally agree wth you that the way other people respond, either by their filthy looks, snidey comments and whispering to each other is the worst thing about having a child with ASD. Even before my son was diagnosed at the age of 5-6yrs old, weve had comments from strangers, friends, family and even proffesionals,. Things like 'theres nothing wrong with him, its your fault, nothing a good hiding wouldnt solve', 'only son, youngest child and spoilt, bad parenting' ect. Friends have even found another reason to fall out with me, when there own childs behaviour is the reason for my son to have a meltdown, because it wouldnt be their angel childs fault pmsl .... I know tend to say something to strangers if I see them staring or making snide comments, im also honest with my son about his autism, in a way he can understand. It does get easier or maybe you get more thick skinned. Dont let them get to you and a good scream now and then is good for you. You can also get 'autism awerness cards' they r pocket size and ideal to carry with you, ive walked up to someone before, smiled and gave them a card. Its amazing seeing their faces change once they have read the cards.. xx

Rachel - posted on 01/23/2012

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i just don't look at people. if you don't look at them, you don't know what their reaction is. and adopt the saying "it's like water off a ducks back"

Cheryl - posted on 01/23/2012

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its not that anyone says anything to me lol if they did i could at least explain why he behaves like that, they dont tho they just give us dirty looks and tut.



they dont ever seem to see that untill he got a bit too excited normally hes behaving better than there little darlings lol

Sharlene - posted on 01/22/2012

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@ Jessica ,I know that feeling ,You just want to turn around and say mind your own bussiness lol. But it does get better I guess

Jessica - posted on 01/22/2012

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Oh it is definitely other peoples actions that are the worst! For years - prior to her diagnosis - people would be so incredibly rude about how shy my daughter was. "What is wrong with her?" always made me want to smack someone upside the head.



I always remind myself that those people are not my family, not people I will likely have to deal with and definitely not my friends.

Sharlene - posted on 01/22/2012

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I just turn to people if my darling son starts to misbehavior I say what. in a nice way of course ,lol And if there that concern I turn and tell them about his autism ,And most of them do understand after explaining to them ,It does get better course autism is more common then any other disablity ,cheers

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