Oh all 6 year olds do that.

Hi Wendy Woo,

Thank you so much for posting this! I find it reassuring, and I'd actually been thinking of posting a similar comment myself. I get this a lot too, and find it very hard, as I just want to say 'Yes, but...', and it would take so long to explain the 'but...', and if people aren't with you and your child all the time and don't have similar issues with their own children, they can't see it. My son is reasonably settled at school at the moment, and he copes quite well on play dates with one other child, so other parents don't really see the extent of his difficulties, the meltdowns, anger etc. Even when he is having a meltdown about going into school, they say 'oh my child sometimes doesn't want to go in either'; I know they're trying to help me feel better, so can't really hold it against them, but I think the issue is that my son's reactions are magnified and more extreme. It's almost as if they are questioning your child's diagnosis and wondering what the problem is (or seems like that to me!), which is difficult too. I'm lucky in that some parents in the school have children with similar issues, so I do get some real understanding too!

I wish you all the best, and please know that you are not the only one who gets this!

Kitkat x

Hi Wendy Woo.

I understand what you are describing. I am not a parent but a  25 year old woman who is on the autistic spectrum. I get this all the time: people do not understand!!. Even people who work in the autism field, like support workers, sometimes don't really get it. Why would they? They do not live with it every day, but at least they try to understand. The same cannot be said for many people, though. They continue to come out with things that make our lives misery, particularly because we already often have self-esteem issues. For example, I volunteer at Age UK every Monday, for 4 hours straight, on a busy till. I began volunteering here on my own initiative, to satisfy my need to do something meaningful, and with which I can be proud. I also have a 7 hour a week paid job, the first proper job I have ever had.

Anyway, last week I was 10 minutes late for Age UK, and this was not caused by laziness but because of extreme chronic anxiety, causing tiredness, as well as exhaustion caused by constant noise at my new flat - neighbours, car noise etc. This would be stressful for anyone, but having Aspergers magnifies the stress 10 fold. The manager said, ''we were beginning to worry about you, did you oversleep?''. I told her that I have been very tired because of being so busy with my job and new flat. She then said, 'well I work a 37 hour week and still manage to come in on time''. I told her that I also have anxiety to contend with, and was almost in tears at this point because I try so hard, and it felt like I was being criticised. She knows I have Aspergers, but I don't think she can really understand how draining life is for me.

Hi Wendy Woo.  I had to chip in to this one because I have a son the same age and I get the same remarks all the time!!!  It is so desperately frustrating.  The other one I hear all the time is 'It'll be fine' or something along those lines.  'It will all work out in the end'.  I think to myself "Really?  It will, will it?  How do you know?"

After hearing it for so long, I have come to the conclusion it's what people say when they just don't know what else TO say.  Your loved ones want it to be fine, don't know how to make it so, and therefore just tell you it will be.  They can't see it from your perspective.  I know how how hard it is - you want to shake them don't you?!?

When you have to work so hard on your sons behaviour, for people to tell you that it's normal is so upsetting.  They don't see what else is going on.  You are really not on your own.  I for one am having the same experience.  I am just trying to not to snap back at the people who love us and want to help. 

Something else on the same lines that I find very annoying is people telling me about life lessons that 'he has to learn'.  I am talking about everyday events that he finds very distressing.  I think to myself now 'round pegs, square holes - they don't fit' and I don't put my son through anything now that causes undue distress.  But it's tough and you have to have a hide like a Rhino to overcome peoples disapproval.

You are not on your own.  Best of luck.

Hi Crystal 12. Thank you for your response. The mere fact that someone understands is comfort in itself. I used to like the film "Rainman" and now its the bane of my life. As you say it is some peoples only reference point. I think the key point I have drawn from your response is the fact that when people ask about the condition they refer to how it is displayed. The responses are then deemed appropriate, because the point is its not the response that is the problem it is the fear and confusion caused by a given situation. It is the reaction to stimulus, break in routine that is not NT (am I allowed to say normal or is that offensive?).

Thank you Autismtwo, this is such an articulate "rant" . I find it a most interesting perspective to hear, one that would resonate with my 6 year old if he could let us in to his little world. I believe your comments may be key in the way we decide to formulate our response to peoples request to explain how his condition manifests itself. Thank you again.

Crystal12, your comments are spot on, unless you live with the condition or the parent, most people around do not understand the condition. Having autism myself, I would say it is like having one socket of the plug out of the mains which makes you short-circuit if too much electricity is channelled in by the world. The supply is still there but the message is overwhelming, which makes you over sensitive to the environment aka senses.

Nutshell ~ fear and confusion

Here is my little rant, or after thoughts, autism is like trying to discover the rule book of life to stop stress and fear in the social environment, once you are taught the rules of life by your parents, i.e behaviour, you have new problem, that the set of rules ie ethics, morals, etc are not followed to the letter and as you don't have the same Nt flexibility(lying, chopping and changing), this rigid rulebook becomes a social nightmare, so it is back stress and fear again. An autism nightmare example, don't park on double yellow lines, or keep of the grass, OKAY !,, people then park on double yellow lines and walk on the grass,,, you see the pain the NT's rule book puts us through !!!!!!!!!!   we should call the earth, the CONTRADICTION WORLD ! It is like getting two conflicting messages at once and you don't know which one is right and the one that is right is wrong because they still park on double yellow lines and walk on the grass.. Arghhhhhhh ! We take things very literal, black and white,,, and unfortunately we remember all the bullshit facts of the Nts which they do not remember, they just make it up as they go along, but have a paper copy which is laws and rules which are bullshit as they are not followed, but they say there are and should be ! Work that one out ? So in conclusion how can you trust NT's when they talk bullshit, it is as if they are half-drunk in the mind and can't remember there own world of rules, but we with autism have to follow them to the letter to make sense of the world.

Hi - me again!   Went to make a cuppa + had a few more thoughts.  It's trying to describe autism in a way NTs will understand.  Let's take sensitivities.  My son has a few noise sensitivities, as do NTs, but not as severely.  I try to describe a noise sensitivity in a way they'll appreciate.  So if something gets on their nerves, I'll explain its much worse for a person with autism + certain reactions will ensue.  Same with touch, sight, sudden shocks, etc.

Hi Wendy Woo - there is absolutely not 1 word I would disagree with in your post.  There's that moment when you're trying to explain how autism affects your child  + your heart just sinks because it's  obvious they haven't a clue.  Or, as you say, they're being kind??   Excuse me??  Some people don't want to accept that someone has autism - think family, some friends, etc.   You find out who your friends are.  People without autism - neurotypicals (NTs) see the world their way.  So things can be rationalised. S/he is being "naughty", "shy" "is spoilt", "sensitive" etc.  Most people really, really, don't understand autism at all.  They've all heard the word, some have seen "Rainman" but that's about it.    Why should they understand?  I never came across it until my son was born.  It's a complicated condition to explain to those who don't understand.  Some people who don't understand also don't listen.  This means they carry on being opinionated + causing distress all round.  Sometimes these people are close relatives, friends.  They can cause loads of problems, fall outs, etc.  It wd be so helpful if a summary could be produced which could be given to people, but even then it would only scratch the surface.  In the end I think there's got to be some very plain speaking so people get the message, hopefully.    It can be a long journey to achieve some understanding of autism + how it affects your child.  Mine's an adult now, but things can still be a puzzle at times!