ASD - fed up with NT parents :(

[catkinq]

I have 2 children (7 and 9) with possible ASD (Aspergers). One is under the ed psyc and we are at the GP referral stage with both. What is really, really getting me down is the constant stream of comments from paretns of NT children along the lines of "well if you all ate together then she'd eat her veg" (yes she would and then she'd vomit); "if you didn't pick the elaves out of th epool then she'd soon swim anyway" (no they wouldn't); "all he needs if a firm talking to" (how to you talk to something that resenbles the taxmanian devil in those cartoons?); etc. No one seems to understand that they may be different adn that maybe the fact that you rchildren do no trespond to all of these standard child rearing techniques might indicate that somethin gis wired differntly in theri heads rather than that you are boing "too soft on them". Does anyone els efeel like this? I've just had to sit and listen to someone telling me that it i smy fault that dd has no friends becasue I do not make her get the bus to school (with the children who sat on her and sellotaped her mouth shut so that she would stop talking). What do you tell them? How do you explain that "not eating your veg" is not necessarily as easily cured as the TV programs make out?
Catkinq

Haven't you ordered your Special Bolshie Knickers and Flame-Proof Vest?
NT parents are often full of it, and you just have to learn to tune it out and either smile at them like a cynical saint or shoot them down with carefully-aimed precision missiles.
It's worse when it comes from relatives, I'm lucky in that I'm articulate and can be quite um...assertive. Plus being a teacher, I seem to get tackled less often than friends with AS children.
Plus I'm enjoying a quiet snigger as all their perfect teens turn into Gremlins and mine is still keeping the rules and doesn't like alcohol.

I'm also a teacher (without a spellchecker) and I do think like you do about the future - when people say "well you will lose them when they go to sec school" I think "well not as quickly or a much as you may think" etc but do find it hard when they offer me books (which I've read) and clutch their children in horror when they hear or see how "terribly badly brought up" mine are and then go on to say that theirs improved so much when they made time to sit and talk to them each day and that why don't I try that (which is what I had this weekend).

So, We Are Not Alone and that makes the crap a little easier to wade through.
Mine's 14 1/2 now and was a hit and roar Aspie rather than a flapper and wailer. Still is when he's in meltdown, but that's happening less and less.
Playground Geese used to hiss as he walked by and say 'Teacher's child, allowed to do whatever he likes'
Stuff 'Em. With plumb sauce and dumplings.

Catkin - Yes I've heard all this stuff, even from relatives. My favourite one from my own in-laws is "if we all sit round the table and eat liver pate/spaghetti carobonara etc, he'll soon enough eat it too". I must one day point out to them that one of the first deficits of autism is the failure to imitate, so that this is precisely what he will not do. I also loved the one about "if you don't feed him at all, he'll soon eat liver pate/bratwurst etc". Er, no, he simply wouldn't eat - that's autism for you. It's just total ignorance really as even the most cursory read-up on autism would tell you the bare facts. My in-laws have 2 grandchildren with autism, but still haven't worked out the imitation thing!

My mother told me that it was my fault that my daughter is dyslexic. Apparently I don't a) feed her right and b) don't spend enough time reading and spelling with her. Please ignore all those "helpful" (aka nasty) parents comments. You know what's best for your child and NO-ONE should judge the way you bring up your child.

But "If you held their hand, they wouldn't run off like that!"

Of course not, because my DS2 likes holding hands Don't you just love all this helpful advice!

I've had my first "taste" of what NT parents are like, as my DS2 has started MS school after being at SN school last year. This week, I apparently have some sort of mother repelling forcefield surrounding me, and makes other parents not want to come within 3 metres of me. Nothing to do with me telling them DS2 has autism

I just need to order my Special Bolshie Knickers and Flame-Proof Vest now.

Yep we get this too

(2 ds's with SN- one AS / HFA, one Autism), plus 2 others (one being looked at for dyspraxia or add, the other a toddler).

Your skin does gradually turn to hide and eventually you get to wink and say 'you're just jealous' (and bizarrely some are, of the teaching help, or the DLa or whatever).

A siomple enquiry about theich Paediatrics Hospital they reained in often shames as well.

Mostly, a decent glass of wine and a cry is best.

Also get competitive parenting- your child can't have ASD as he is so- thier child is so much ahrder etc etc. it's insecurity. If I am inclined I explain the ins and outs of the whole diagnosis and how children can vary immensely within that (for examply ds3 is hyposensitiv so likes ebing tickled swung etc) but if nto I give them a few choice tales about ds1's meltdowns, they tend to avoid us then

After 9 years of having an autistic nephew my sister still doesn't 'get it'. The other day when I mentioned I would have to persuade ds into his shoes before we could go out she said "You're the mummy, he's the child. You should just tell him". Hahahahahahahaha (sorry, that's me going hysterical).

What makes me laugh is that they seriously think that we will slap our own foreheads and say, "What a fantastic idea! Why didn't I think of that sooner?!" and then skip off into the sunset with our miraculously cured children.

Ds apparently didn't talk because I didn't talk to him enough. He also didn't talk because I talked to him too much.

His tendency to not notice that other people existed was because he hadn't been to enough toddler groups.

And he wouldn't have meltdowns if I would just show him I was the boss.

These days I just smile, nod, and ignore.

Oh God yes, theyn used to tellme how to toilet train ds3 and try and make me promise to attend calsses; the fact that ds1 and ds2 never had an acident at school completely passed them by...... likewise the fact that also- ASD ds1 has a massive verbal ability )or did when he wasn't too shy to use it) and ds3 was severely delayed 'do you talk to him'

Oh fuck off!

Pixewl I often wander around this house yelling 'I am the adult, you are the children' yto a wall of blank faces (not all of them SN!)_ I do it purely to remind myself I think, sometimes I do wonder.

DNPTRB, but have you tried buying the cheapest nappies, because then he'll be so uncomfortable in them, that he will WANT to go on the toilet!

'What if you told him there were no other clothes for him to wear, he'd have to wear the new socks you bought'

or

'what if you told him he wouldn't get any pudding if he didn't eat all his tea'

or

the old favourite...

'have you tried stickers?'

My first experience was when DD would refuse to say hello to a friend, and apparently her child would just have been forced to from a young age

Turns out DD was just a good judge of character. The woman is a bitch

My mum (works at the school) is trying to educate the staff one at a time by thrusting All Cats Have Aspergers at them

It really does help that we all experience the same thing - even though it feels like the loneliest experience in the world in RL.

I think this is one ofthe ways in which having a very severe child is actually easier. Firstly DS2 is oblivious to their comments and secondly people tend to accept fairly quickly that normal rules of parenting don't apply

But I had years of that and I actually found the forehead slapping followed by " GOOD GOD STICKERS!!! What a fantastic idea! Five years, two educational psycologists , two peadiatricians, two schools, one nursery and a whole host of specialists and none of us thought of stickers. Fuck me , he could be at uni by now if I had met you sooner"

In my somber moments I just find that my knee jerk is " I appreciate your trying to help but actually it is incredibly rude of you to assume that I haven't thought of and tried these things. He has autism. It is very difficult and suggestions like yours - however well meaning, don't help"

But I get it less now. Now I just have to listen with astonishment to the details of a programme they saw or an article they read where a child as severe as Pagboy was cured using ABA/organic food/ horse therapy/swimming with dolphins or the judicious and regular application of marmite

it does help to know that others have the same expereinces. Mine are both quite mildly affected so it is difficult to get anyone (non HPs) to accept that there is a problem. In fact we did not suspect that there was - we just thought that ds was "very difficult" and dd g&t. We actually had our third child assessed by anyone and everyone. It was only when they pronounced him "normal" that the penny dropped - ie we both thought "but if this is normal then what on earth is wrong with the other two?"

ds1 is convinced that ds2 is psycotic as ds2 does things like pretends his toys can talk, runs his trains along imaginary tracks etc and ds1 thinks that ds2 must be able to "see" these tracks and must be talking as himself, not as the train etc.
Catkinq

Mine is very mild too, so people tend to think I am just excusing a rude child/pandering to whims etc

it is the "pervasive" part of the condition that really gets me sometimes. Usually we are fine in that we have adapted our lives to fit around dd and ds1 but we have had to adapt just about every aspect of our lives. This is fine when we are in isolation but once we try to interact with anyone else (whihc obviously we both need and try to do so that dd and ds1 can "practice interacting") we get all the HYTASC (have you tried a star chart?) along with all the looks of horror at the idea that any parent could pander in so many differnt ways and have such an inappropriate attitude to every single aspect of their poor children's lives.
Catkinq

Pag, I'm going to record your quote "I appreciate your trying to help but actually it is incredibly rude of you to assume that I haven't thought of and tried these things. He has autism. It is very difficult and suggestions like yours - however well meaning, don't help"on a dictaphone, and play it to those who make suggestions to me. It'll be easier than repeating it over and over again.

I prefer the 'Fuck me, he could be at uni by now if I had met you sooner' - that did make me chuckle.

And I can assure you that marmite therapy is a hoax!

We have this too from busybodies to relatives...grrrr!!!!

"He is keeps doing the same naughty things because you 're too soft...have you tried the naughty step???"

and

"he just plays you up for eating! you just give in too quickly"

one of my fave

"his obsessions are just like those of any other child, only made worse because you let him do what he wants".

I could go on. But i'm getting agitated as i'm writing...

the (ms) school have been quite good about dd (esp now ed psyc in involved) and she has a "friendship group" which the SENCO is using to teach her how to make friends and to improve her social life but paretns are now startign to request that theri (perfectly happy with the arrangement) children are removed from it - not sure why - I think that tehy feel taht their child is not benefiting which I can't really see as actively teaching social skills, friendship skills etc must be just as useful for NT children as it can only improve their ability to get on - adults can and do pay a fortune for these sort of courses, especially if business relalted!
Catkinq

I have a nearly 7yo with a dx of AS

when we were going through the assessment process a friend (of a friend) - who works for CAMHS and is supposed to specialise in ASD - took me aside and said that he saw no evidence of ASD in ds and that his problems were "more behavioural" and "had anyone had a chat with us about boundaries"

I was in bits, I felt like such a shite parent

but he was WRONG

people often are, I try not to rise these days

How rude of your friend GS! I'd have slapped them.

Cat, the friendship circle sounds lovely, shame the other parents aren't open enough for it. I can only hope their poor children don't grow up to be as anal as they are.