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

Agree with this thread still chiming three years on.

I loved the one about the ds thinking his nt younger brother must be psychotic because he makes his toys talk and runs his trains along invisible tracks! That is soooo ds1 with dd. He gets so worried and irate about her when she's playing. Leads to an awful lot of arguments though, as dd is not a girl who stands for being told she's wrong.

I've even had the boundarys chat from the (new) behaviour psycholgist! For a day or two it upset me ( I had high hopes as you do...) but then I thought even psychs have to learn the limitations of theory somewhere! We all know that it is not quite as straight forward as setting boundaries ( we are masters of that - just the ASD side in our child is not)- if only it was!

I'm selective about the information I impart to other parents. I'm very lucky though that I can rely on a good handful of people who don't have all the answers and a few who have family or close friends with kids with ADHD or on the spectrum and can nod along with me about various frustrations.

On the veg eating front, with DS2, I actually did find a particular TV program very liberating. It was the Toddlers who won't eat program shown and repeated ad nauseum on ITV a few years ago. The message that for children with issues around eating, the fact that they're eating and getting the calories necessary for growth is what's important. Children are physiologically quite resilient, even on very limited diets and so long as they're happy about eating, adding variety can come later.

DS2 get his vegetables from the likes of onion rings, pizza, sainsbobs vegetable fingers (a recent addition which he will eat most of so long as I cook them until very dry and crispy) and naff all else, really. I put a tiny bit of veg (literally 2 peas or pieces of sweetcorn or a few slithers of onion, no more) on his plate with a meal to keep it normalised and encourage him to handle it when he's finished eating.

Here's a link to a synopsis of that program I was telling you about - there's a book, too, I think www.itv.com/PressCentre/MyChildWontEat/Ep1Wk2508/default.html

Aaaargh! Zombie thread!

Magso - before we asked for a referral for DS1, our HV at the time (not the one who helped refer) asked if I needed help with setting boundaries with him because he was wanting squeezes against the back of the sofa and playing with my hair.

Tis a zombie thread ouryve, but one lots of us felt was still worth posting on, as it kind of shows how nothing really changes. Three years and most of us are still dealing with the same old ignorant attitudes.

Love this thread. HFA here and mil said they've got it all wrong, not told many people as already get given "advice". For example the hairdresser who ignored that he's terrified of clippers and wet to use them. Simply couldn't understand/believe that the nose actually hurts him. Got another session at infant school tomorrow, first one where they leave us and go to class.... I'm trying to form a bubble and prepping self to "smile and wave"

Told today what ds needs is for my husband to take ds abroad and give him the lashing of his life. I said that won't cure his autism . cousin said but it will stop him thinking he can do whatever he likes . Ds is 13 aspergers. I have a 2 year old who seems to be too, better get the belt out now save myself the hassle of this autism business. Also have nt child . If I had had her first would not have taken me 12 years to realise ds was different not just difficult . Also had the school yard shunning from his first day if school when he would not queue up and ran around the play ground and was so big and rough apparently . Told there is nothing much wrong with him and you won't keep him in in a few years time by mil. She had him for 2 months and now gets it. Even with perfect calm grandparents with absolute routine and quiet he lasted only two months before they couldn't cope. It really isn't my parenting . It's a real condition

God this is sad.

When I finally summed up the courage to tell my sister that my DS has HFA...''but he's fine, isn't he?'' with a frown. About a week later ''are you sure its autism'' then a few days after that ''I dont know why you let him away with it'' (as he refused to eat a dinner that wasnt familiar...again).

I literally put on my bubble head and look at the ground in the school yard and am starting to do that with family also. If they are not interested in knowing, nothing I say will get it through.

I didn't mean love this thread as in yay so many ignorant people but love it that I'm not alone iyswim

ouryve - please describe "squeezes against the back of the sofa" to me, I think that's what my dd is trying to get me to do. Didn't think it was sensory, but now you mentioning it makes me think it is.

mama - yes it's good to know you're not alone.

Have also has the "are you sure it's ASD" and "do you agree with the diagnosis" from various people including my mum.
Um, yeah, I wouldn't have fought for the past 2 years to get her a dx if I didn't think she needed one! (and this is the woman who won't babysit dd)
I wouldn't swap dd for the world but i sure dont need parenting advice from someone who has no idea.
Am learning to twist everything people say into a positive, eg, if you ate as a family... to ...it's much better that we don't have to stress out at meal times. Etc
Although filthy looks in the playground are usually returned with a overly enthusiastic smile and wave.

thread has chimed with me too... (have gotta say cats HYTASC; Have you tried a star chart, comment was fab). when I get comments I will say to myself file it under "High Task"

'those' looks in the street are referred to as the cat's bum face, a phrase I got from MNSN,

Although filthy looks in the playground are usually returned with a overly enthusiastic smile and wave.

I initially read that as filthy books!!

Still happening to us and he's 17. I think some people think it might be catching.

I was once told that I needed to "Bond" with my son.

If I hadn't had walked away my fist would have bonded with her face as I was already in a very bad and stressful mood.

trouble with toilet training? that can be sorted in no time - why don't you just tell your DC you use the toilet?

choc that's so true, why hadn't i thought of that one

oh wait, it's because repeating the same question of 'do you need to use the toilet' acutally increases dependency and my 5yr old questions the use of the wording

i think i'll stick to using the social stories - and no i wouldn't be better telling her a story with a moral in

Any sentence that starts with "why don't you just" or "you just need to" makes me want to punch something.

My most infuriating comment was from a nursery manager I was meant to be starting a job with, who knew my DS had autism. "But have you tried toilet training him?"

Oh! Fucking hell, why didn't I think of TRYING to toilet train him??

He's 7 and still in pull ups. Has withholding and constipation issues, and a lot of toilet anxiety.

I didn't take the job. Couldn't work with someone so ignorant and insensitive!

Obviously - I have tried everything. What parent wouldn't?

Well obviously we keep our kids locked up in padded cells at home like Victorian psychologists, spending our days praying for forgiveness for whatever terrible sins brought us to this point (except when we bring the kids out to parade them for public ridicule.) Certainly we don't watch documentaries about autism like those helpful people do, TV is the devil's portal after all.

Or maybe it's because really we enjoy the dependence and are too needy/flakey/psycho to face up to a life of our own.

silk

for silk since she hit the nail right in the head.

So glad this thread returned from the past - I'd never have found it otherwise and it has cheered me up no end! Me, I would love to get hold of all those smug parents who told me, 'Of course we got DS into a good routine very early on so he slept through the night from ...' and show them my 15 yo DS who is now on melatonin for AS-related sleep issues. Yes, this is why I was right all along to go with my instincts and sit with him, not leave him to cry it out and get over it. All these issues are things people assume are 'won't' whereas we know it's 'can't', even long before DX.

apparently, I ought to make hiim wear his shoes.... please tell me how exactly am I meant to force shoes on a 4 year old boy?

I ought to get him potty trained for school as well... (now done) but exactly how much control do you have when you have diarhoea? toddler diarrhoea does not make these things easy.

putting him on reins/in the pushchair when he is clearly too old for both... ...oh do they prefer that he gets run over when he runs away? or may be they will offer to carry him when he refuses to walk at all. perhaps I should just drrag him along the street by the am. sure ss arre going to love that.

Red I kept my asd d's in his buggy until the summer before school as in I stopped using it when he started p1 and would get comments all the time about the size of him. Thing is if I had known he had asd then I would have got a Maclaren major and used it until he was 8 -and he then got a sense if danger stopped running awY all the time . Didn't get a diagnosis until eleven best friend said you must be so relieved it's not bad parenting

I do the arm dragging thing with my nearly 4yr old! I say "Standing and walking" in a brisk dogtrainer voice to try and look less chavvy. Still use the pushchair for afternoon schoolrun as it's too chaotic (and have to walk home uphill) but just crossing fingers that once he starts school that will magically change (less pressure to reach the siblings.)