Talking to people who don't understand.

[Viper]

I was talking to a lady over the road today and she was asking about Bens problems and I was trying to explain but I got the distinct impression that she didn't really get it. Comments like he sounds like he is just frustrated when talking about his meldowns and well all kids are fussy eaters. I continued to try to explain but just gave a very sketchy account and couldn't be bothered to go into too much detail. She is a very nice lady but some people just don't seem to understand or can't see beyond what they know. She said "he looks very normal to me"

 

She was trying to understand but I just lost interest in telling her. I thought even if i did she would still not understand so I was wasting my time.

 

Am I alone here or do you do the same. I feel a bit bad at my laziness, after all if someone is asking I should try hard to explain.

[TheNeil]

Not at all Viper. When I was first dx'd I tried to explain to people what it meant, what my traits were etc. and it was so frustrating when the response was 'Oh well we all do that', 'You're just shy' (which was my mother's favourite for about 29 years) or something equally trite and cliche'd. I've kind of given up now and generally think "Well, you trying spending a day inside my head and then we'll see how alike we are"

 

I think people outside of the ASD world, in general, have a great deal of difficulty understanding that you can have something 'wrong' with your head and not be a deranged lunatic. I don't want to sound cruel but they seem to find it easier to show compassion/understanding for people who are physically affected - if you're seemingly 'normal' then they just don't seem to get it

 

I suppose we should always make the effort but sometimes it just doesn't seem worth it when you get so little understanding back. Maybe T-shirts might be the answer (only joking)

[Paula]

I stuff them viper i wouldnt bloomeing bother.

 

If folks genuinly want to know about autism then theyd button there gobs whilst you told them about it instead of saying ignorant stuff like "he looks normal" or as some dozey cow said to me "Routines cant be good for him you should try to stop that" I coulda smashed her face in.

 

I dont bother me no more if some one asks i say hes aspergers if they say whats that i say its too complicated to go into if they know about the condition coz they have a child or relative with it also then you dont have to explaine coz they say "weve one of them in our family also"

[Flora]

The ones that irritate me the most are the ones who say their kids are the same when they clear are NOT. I still haven't given up trying, though like viper and Paula I'm almost at the stage where I can't be bothered anymore. It's bad enough with neighbours and strangers, but when you're still banging your head against the wall trying to get their dad to understand... now that really IS wrong.

 

Lauren

[Bagpuss]

Oh heck, how long have we got?? I've heard "oh shes just like you at that age" , "shes just as strong willed as you", "she'll grow out of it", "she's just got a temper like her mum", "my daughter/son was exactly the same at her age", "are you sure shes autistic, she can talk", "is she really autistic, but she plays so well".........hmmmm, havn't added my replies

 

On a more positive note though, my mum has blown my socks off recently. Not only has she been quietly getting books from the library on autism to learn more, but she is also going to come along to the Early Bird Plus course by herself next week because we are on our hols. Then, she rang the other night to tell me about the documentary(mentioned on the forum) which is due on this week

[lotty]

nobody gets it, family, close friends.i have given up on talking about it. even when people ask they dont want to understand. so i just dont talk about it

[MumTee]

Oh I know just what you mean - you get to the point that you dread people asking.....

 

my current favourite is "all boys do that" which seems to be trotting out regularly this month - along with the variations on a theme about how I was destined to have a special boy because I'm so patient.....oh, and that he would probably talk if he didnt watch so much telly...

[Bullet]

I usually give a couple of examples of how Tom's ASD affects him and if the person isn't willing to at least listen then they're not worth my time.

[Canopus]

Unfortunately such people are often in a position of authority.

[justamom]

I so understand what you mean Viper, people just dont get it, you could explain things until you are blue in the face but they just dont understand, until they have experienced it first hand they are clueless.. Its always easier to bring up someone elses children isnt it

 

I've given up explaining things because i get "he looks ok???? -

[aro]

Justamom, that sounds so like my great aunt, who was know to say.."I'd know just what to do with him if he wasn't mine!" (about her son with severe asthma)

 

Have also had the TV one from in-laws

 

But this is so new to me and we don't know that much about how "I" see the world yet that I don't think I could explain most of it any way yet!! want it explained to me first

Anna x

[Lynden]

How hard I try and explain depends on whether they are asking because they think thye should, or because they are 'really' interested. I have a friend who asks all sorts of questions, and apologies for asking as much - but I like that she does because it allows me to offload at the same time. The amount of people who still dont take us seriously is unbelievable though, just because he is young.

 

Lynne x

[Vix]

I have given up on a couple of old neighbours. they are quite old and haven't got a clue what autism is. I am often asked how Kyle is, like they think he would have recovered by now! They tell me he'll get better as he gets older, and he doesn't talk because he's lazy!! I try and explain but they just don't get it!

 

I get a lot of "but he looks ok" as well! What is he supposed to look like then??

[jlp]

I've been asked if 'he'll grow out of it?' and 'if it's just an attention seeking thing?' I replied 'no, it's autism'.

 

Most annoying as the same person had already asked the same questions previously.

 

I don't go overboard on explainations these days - if people are really interested then I would but most aren't!

[mrs phasmid]

when phas jr was first diagnosed we sat the other phaslets down and explained to them that the meltdowns and rages and misunderstandings had a reason, they all, of course because of their ages, told their friends and one mum knocked and asked if he was "safe" to play with the others, we explained and suggested a couple of books to read if she was still worried, she read them and although she admits that some things sound like what other children do that obviously phas jr is much more extreme. point being that if we give up talking and explaining no one is ever going to understand, of course our kids look normal if they were in wheelchairs or used a white stick or were downs it would be obvious to any passer by that is the problem we all have our kids DONT look any different from any other having a tantrum, except of course when they are 16 and 6ft 4in, thats why people say things like he wouldnt behave like that if he were mine. education education education is the only way forward and to do that we must NEVER stop explaining even though it can be frustrating otherwise asd will always be naughty child syndrome that only boys suffer from and that all of them are like Rainman or sitting in a corner in their own world all the time. or that the dog in the night time is a bible NOT! ignorance is spread by frustration if we the only true experts get frustrated then we are helping to spread the ignorance and so we become as bad as them. remember by explaining WE are taking THEM out of their comfort zones and of all people on this planet we should understand how people react in that situation

 

sorry rant over

[LizK]

Depends upon the motivation of the person I'm talking to or whether I can be bothered! Some friends did the 'my child does this' thing but I think that was with best intentions of trying to make me feel better even if it didn't always. One person though kept repeatedly saying this despite me saying how fed up I was of such replies and she obviously thought I was overreacting and didn't understand I've another good friend who sometimes still does say but that's because she is reminding me that sometimes how my son is is just typical of a four year old and it's good to have that persepctive. She works in SNs and is very sensitive and aware that a lot of how he is isn't like other children so I tend to listen to her.

 

I do find it very hard to explain adequately about how autism affects DS as it can affect him in contradictory ways. Today he is very withdrawn and uncommunicative, at the weekend he was running around like a loon screeching at the top of his voice! I'm sure some people still think I use his autism as an excuse for poor behaviour but that's their problem not mine

 

Lx

[BusyLizzie100]

I agree with Mrs Phasmid - every opportunity to educate other people, ESPECIALLY family. I may be a bore, but it's the only way the real facts are going to sink in, particularly with the views so often bandied about in the press.

 

My particular hate is when people say 'but all kids do that'. I've thought hard about an appropriate response, so far have only come up with 'yes, so just imagine how much worse X is/how much more difficult it is for X etc'.

 

Just because autistic people may be in a minority doesn't mean that everyone else is right - just look at other areas of prejudice, like race, colour, sex or age... Why can't we and our kids be given the benefit of the doubt? Why does everyone have to be judgemental or dismissive????

[Lucas]

Sometimes the ignorant comments from others contain grains of truth. You figure out the reason why some people say "But all kids do that" is because even normal kids are not normal; they often act even more weirder than Autistic children. But their weirdness has been documented and studied and found to be neccessary to their development, the same assumption is not made of weirdness in Autistic kids.

 

There is no such thing as 'Autistic behaviour' despite the term being reguarly invoked, any expressed behaviour an Autistic person does can and is done by non-Autistics. So when another parent says "my son/daughter does that" they proberly do but you know yourself that there is something different about the way Autistic children do it. They may do the same thing, but for different reasons, so there is something different.

[Brook]

Spot on Lucas.

 

I know that I've brought this thread up before, but it's a particular bug bear of mine.

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=3704

 

Brook

[pingu]

so glad someone else has this problem, One of the very reasons i havent posted for a while is that i have been so emotionally drained and feeling like cracking - what with the increasing hyperactivity (which no one else sees) The increased stimming (which no one sees) the horrendous meltdowns and self harm (which no one sees) In fact No one sees nothing - blind as they are to the reality which is our lives all they see is a quiet shy boy who is a little unique in his mannesarisms.

 

Thus i feel drained, sick and tired of trying to explain to people how bad things have got, and feeling frustrated as their blank expressions and looks of "i dont think its that bad" !

 

Yesterday for example - we had the occupational therapist here, she is lovely and has already sorted us out with a 6ft gate for the top of the stairs, and a fence so he can play out without dissapering. So yesterday she came to see how things were going and i asked her if there was any way we could put a waterproof (sealed) floor down in the bathroom as kieran keeps getting water on the floor and it comes through the kitchen ceiling. The lady was at a complete loss to understand HOW he got water on the floor at such a level to cause a problem, and no matter how i explained it - it didnt make sense. I ended up saying "look it doesnt matter- it sounds stupid - forget it".

 

And even a family member has been at it, and this really did upset me as i love this woman, and i know shes getting on a bit, but she can be so insensitive. Recently we had a conversation about kieran, it went something like this.

 

Her:- Did you see the jeremy kyle show today

Me:- I did ! (it was the episode where they had the insperational kids on)

Her:- Well at least your problems arnt as bad as that

Me:- What makes you say that?

Her:- Well you dont have to look after him 24/7

Me:- I do

Her:- Come off it, kieran's no where near as bad as all that

Me- You wanna try living with him

her:- at least hes not disabled

Me- thats exactly what he is

Her:- hes not in a wheelchair and at least he can walk and talk, its those other people i feel sorry for, having to care for them "poor" kiddies all the time, getting up every hour to put creams on and feed them through tiubes

Me:- I feel for them too, but these are different conditions, and i have to do all the 24/7 stuff just for different reasons,

 

I realised at this point i wasnt getting anywhere and changed the subject, as i was beginning to sound feeble in comparrison to these REAL problems. Things like "well i have to cope with meltdowns" didnt seem to have any relevance what-so-ever to how she classifies the need for extra help.

HENCE - Im fed up with the ignorance,

 

Im off to a meeting soon with the psychologist and i have got to try and explain how bad things have got, I have to be his voice - but sometimes i ask myself is it worth it? babble away about the problems his latest routine and obbsessions are causing and it sounds like a weak excuse for not coping. but in reality its not weak its real, and to be honest its tiring, and i dont think we are ever going to make ignorant people understand what goes on. they are too wrapped up in there perfect lives to notice.

 

Note - No offence meant by that- i know some people who have no connections with autism been very concerned for his welfare, its just the people who i would expect to understand - seemingly dont!

 

Shaz

[Viper]

I totally agree Lucas. I think thats the problem. Other kids do have tamtrums, are fussy eaters etc. But if you say yes but mine is worse people look at you like you want it to be worse, IYKWIM.

 

The lady I was talking to was interested in Ben and the whole reason I home educate. Her children went to the same school and she recently moved them to another school. She was saying the way Ben was treated was disgusting and that other children at the school are in nappies and the school deal with that. But the whole time I got the feeling she couldn't grasp the idea that Ben had a phobia/mental block when it came to toilets and that I had just not trained him properly.

 

I felt stuck for words to explain it in a way that didn't sound like I was say "oh poor me" even though I don't feel like that with regard to Bens AS, I get the feeling people think thats what I want, sympathy. It makes me feel uncomfortable and I stop talking about it.

 

I do think we should try to educate people but it is hard to find the right words to help them understand.

[col]

On very similar lines, as it's DD7 . Was at her school this morning and the office lass goes what's wrong. And i said it took 15 mins to put three items off clothes on. She starts going oh mine were the same this morning as it was sunny they just wouldn't go asleep last night and slept in this morning.

My daughter has AD/HD it can take up to 2+hrs each night to get her asleep, last night it 1hr and 30 mins. She also bed hops. Last night she bed hopped 3 times. She is like this all year round regardless of weather!

[asereht]

Viper,don't even get me started on this one fed up trying to explain things to people now with certain people I just don't bother

 

I too am with Lucas on this one.

[jb1964]

Im off to a meeting soon with the psychologist and i have got to try and explain how bad things have got, I have to be his voice - but sometimes i ask myself is it worth it? babble away about the problems his latest routine and obbsessions are causing and it sounds like a weak excuse for not coping. but in reality its not weak its real, and to be honest its tiring, and i dont think we are ever going to make ignorant people understand what goes on. they are too wrapped up in there perfect lives to notice.

Shaz

 

I know exactly what you mean Pingu - I'm tired already of fighting and for what? nothing? because there is nothing any of these professionals can say or do that makes the situation any better - there is no help whatsoever - other than they advise you to contact the NAS or go to a group as other parents can offer you support and help as they've been in the situation - I haven't done either of these things as to be honest I haven't a clue what I would say because all I really want to say is 'help me please!'. All the professionals say is you're coping brilliantly as parents and you know more than us about the situation as it's the parents that become the experts!!!!

 

Hope the meeting goes well.

Take care,

Jb

Edited June 7, 2006 by jb1964

[lancelot]

I was talking to a good friend the other day who really is starting to understand (yes, she says 'My daughter does that!' but then, between us, we are starting to wonder about her middle daughter -- fiercely academic, utterly silent at school, explodes at home, won't mix different foods, must avoid certain clothes, textures, colours, noises...hmmmmm). She said, rather astutely, that sympathy is OK, but not PITY -- which is what we tend to get from the oh-so-perfect brigade.

[BusyLizzie100]

Yes, I agree - educating at all times is ideal but it can be hard and sound like self-pity. It's hard to get a balance. Plus, with ds1 it's hard to know how much he's taking in if he happens to be present. I don't want pity, I just want understanding.

[butterflycake]

My mum has told me i need to grow a thicker skin and dont worry what people think as i had been getting upset thinking people were going to be asking me questions. And to tell them nothing if they ask as it is none of their business. It is easier said than done sometimes depending on who the person is. I hate the way i feel as if i should be saying my son has autism. I mean nobody comes up to me and says guess what my son is neurologically typical. My next door neighbour who i never really see said to me one day he doesnt say much and i said i know hes quiet. I thought i dont really know you im not telling you my ###### well business.

[Stephanie]

Well thank god we are here and understand you eh? Lol.

 

I haven't told many people about our son yet, but I did tell a close friend - big mistake.

 

She was going on the other day about a film she saw .... "there was an autistic kid in it, he couldn't talk, communicate and was a total retard" ... like she knows what autistic actually means .... when I told her my son was ASD she said "well he looks normal, he doesn't dribble or anything does he?" In her mind autistic means "cabbage". Some people haven't a clue!

 

I try to justify it by picking out my sons good points, just to make myself feel better!

 

Brick wall, head, ouch!

[baddad]

Not sure on this one...

On the one hand, I don't think we need to go round apologising on behalf of or explaining for our kids, but by the same token i don't think we need to hide it either - it's not like there's anything to be ashamed of, is there?

My son is autistic, pure and simple. He's a beautiful, intelligent, wonderful little boy, who happens to think differently in some ways from other children his own age. If he's in a situation where that difference becomes evident, it's easier for everyone if he can explain that. Forcing him to announce it as a 'justification' for his different behaviour would be damaging to his self esteem, but equally so would be to give him the impression that he needs to conceal that difference, or 'mask' it behind a character he assumes for the benefit of other people.

We don't have to explain anything... but I think we DO have to be honest with ourselves about the reasons why we might choose not to, and the context in which we make such decisions.

 

Stephanie - I'd agree some people 'don't have a clue'... perhaps your son can help to give your friend a clue? That said, some autistic people can't talk or communicate and DO dribble (though that doesn't make them 'cabbages'), so you can't actually explain 'autism' per se through your experiences with your son.

 

L&P

 

BD

[justamom]

My son is autistic, pure and simple. He's a beautiful, intelligent, wonderful little boy, who happens to think differently in some ways from other children his own age. If he's in a situation where that difference becomes evident, it's easier for everyone if he can explain that. Forcing him to announce it as a 'justification' for his different behaviour would be damaging to his self esteem, but equally so would be to give him the impression that he needs to conceal that difference, or 'mask' it behind a character he assumes for the benefit of other people.

We don't have to explain anything... but I think we DO have to be honest with ourselves about the reasons why we might choose not to, and the context in which we make such decisions.

 

L&P

 

BD

 

Baddad you have just a lovely way with words!!!!! Wonderfully put

[Lucas]

I dribble. Often while talking, I sort of just forget to swallow.

[Stephanie]

I have actually given up on that friend, she just upsets me, she totally doesn't get it. At Christmas she bought a present for my youngest son but not for my 5 year old ASD boy and he was really upset. It's like she has written him off because of his disability. I have written her off as a friend in return.

[madmooch]

My sister-in-law gave H a bob the biulder mobile phone ( for a 1yr old) for his 5 th birthday, grrrrrrrrrr.

 

Just because he has no interest in toys and prefers household appliances and cannot talk DOES NOT MEAN HE'S A VEGETABLE, I'M STILL ANGRY . I could kill!!!!!!!!!!!

 

Clare.

[dooday24]

WHEN PEOPLE ASK ABOUT REECES BEHAVIOR I TRY TO EXPLAIN BUT ALL I GET IS YOU NEED SUPER NANNY TO COME AND SORT HIM OUT AND THEY TELL ME TO GIVE HIM A GOOD SLAPPING SO I JUST IGNORE THE COMMENTS AS BEST I CAN NOW BECAUSE PEOPLE MAKE ME SO MAD