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Succinct, explanatory lines for unconvinced friends & family of ASD DS (age 3)(11 Posts)
I am still coming to terms with my DS's autism diagnosed last November but have embraced it and found workarounds for the difficult behaviours we are faced with. These include the use of TV during mealtimes (which I am not proud about but there is no other way of rooting him to the table), bribery to actually eat - I put the reward, usually a mini smartie, within his sight to get him to eat his sausage etc and use of my iPhone to watch uTube videos of steam trains which he likes when he needs some downtime after a burst of excitement or after his nursery school
DS is not especially severe to others who only see him for the odd weekend. I get constant comments of 'are you sure of the diagnosis', 'aren't you just spoiling him', 'have you tried mealtimes without the TV' etc
I find these comments so incredibly unhelpful like I have not got a clue what I am doing and should listen to their better judgement. I think I am perceived as an overly neurotic mother of a son who does not seem 'that autistic'.
I also get the 'all children do that' comments when I do give an example of his autistic behaviours.
The comments feel totally undermining and unsupportive and make me feel quite isolated. They come from some dearly close friends and members of family with children of their own. I desperately need some simple but clear retorts that do not offend but put into words why we operate like we do.
Does anyone have any (sensible) suggestions ? Many thanks
PS Even DH says DS just needs 'more discipline' and he 'has to learn' that the food placed in front of him is all he is going to get and to eat without TV. Yet same DH is nowhere to be seen at a single mealtime !
I don't have any snappy comebacks for you to use. But I can tell you that you should never take any notice of anyone who says "all children do that.."
Whenever someone says that I KNOW they do not know what they are talking about and that their opinions do not matter to me.
The only people who truly understand ASD are those people who live with it 24/7 day in, day out. Take no notice of those who make comments who are not in that position. See if DH says the same when he IS around for mealtime.
You do NOT need to justify this to anyone.
All this must be horrible for you as it does kind of put you in 'your world' and everyone else over in another world when they come out with such comments.
Why not give family and friends a book to read? I bought Ten Things and it was a good and not heavy informative read actually it was recommended here
I passed it to my mum and to the school. It does then leave an avenue for discussion if you or your friends want to talk after. If they dont then you have still given them an insight into your childs life and when another "comment" is passed just nicely and calmly say that you feel you must let them know that whilst you can understand they are trying to be helpful they are actually upsetting you and ask that they please respect my sons diagnosis and leave it at that.
I used to just reply to those kinds of comments, i.e. shouldn't he learn to eat at the table without the tv as 'Oh goodness, I have much bigger problems than that' and ignore leaving them a bit bewildered but quiet and if I'm lucky a little bit sympathetic.
Agree with Star's line as it's the bare bones truth, isnt it!
I'm just at the beginning of this road so I'm sorry I haven't got anything helpful to say - but I already recognise the comments and the isolated feeling - as if you really hadn't tried everything else first... so frustrating!
We have no diagnosis yet, but with my DD's delayed speech/language & eating problems etc I've had a lot of the "are you sure you're talking to her enough?" (all the time, but I can't make her look at us...) and "should she really be allowed to read books at the table?" comments - from family/friends who should understand, but don't, because she 'seems OK' to them.
I hope you get some good responses from everyone's experience.
I second the I have bigger worries one and am planning on using that for next time I am tackled about dd not being dry at night yet. Its the truth!
I sympathise though, its so frustrating when you are working so hard to meet your child's needs to have someone belittle your efforts like that.
I have also been known to say well the ed psych/SALT/doctor said ...then talk for so long about why this is important and necessary that they never ask again.
Not really got any come backs because I dont think it is worth replying to the stupid comments like that. Just to say though my autistic son eats in front of the tv and he is thirteen. He eats there because if I make him sit at the table he doesnt eat. I could fight that battle but with ds there is always a bigger issue that needs addressing.
Thank you all so much for your replies - the bigger worries one is just great.
I was trying to explain my concerns about DD (21 months & a whole 'nother story) to my sister today on the phone and had to explain yet again the subtleties of social communication (or lack of it) in a pre verbal child. ie eye contact, joint attention, bringing things to show me, mimicking and even just pointing. She expressed real surprise and said she did not notice that sort of thing in any of her three DSs.
I guess once you have been 'educated' in these things it is just plain obvious but perhaps it really is too subtle to the uninitiated
Yeah, it was only in retrospect that I realised that my very language delayed DS1 would point out any aeroplanes that flew over and say 'oooeroooer' while looking at me. He didn't have any words until he was over 3 but his social communication was fine. When DS2 didn't talk I thought, 'here we go again.' But we weren't going again, DS2 has ASD.
that's the thing, toppy - if you are aware of something, you pay attention to it. I assume your sister's children are all NT and hence your DC's communication difficulties were never an issue for her DC and therefore, she didn't look out for certain things the way you do.
but family can be really frustrating. the other day my SIL told me that DD (3 with severely disordered/delayed language, no other dx yet) can't possible have SN as there aren't disabled people in her family. WTF!
I also tend to stick to something along Star's "I have bigger problems" line.
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