Here some suggested organisations that offer expert advice on SN.

So why do you think your dd has autism? Sick of justifying...

(31 Posts)
greener2 Sun 03-Feb-13 20:15:01

I am going to post again with another heading to see if anyone has similar with their dd ds but I feel realy sick of justifying why i think my dd may have autism. I am sick of people not believing me and people being patronising saying 'oh yes my 4-5 year old does this and that' - why would i make it up. I wouldnt wish this worry on anyone.

And on this rant, i am sick of family and friends not supporting us because they dont see a problem.

Rant over lol

lorisparkle Sun 03-Feb-13 20:34:15

I sometimes think people say things without realising how patronising, annoying or insulting they are being. Ds1 has a speech disorder and reading difficulties - possibly dyslexia. I get comments like 'my DC speaks so well because we speak to her all the time' or 'I think my DC reads so well as we have read to him everynight since he was little ' I feel like saying 'I had been feeling guilty about what I must have done wrong to cause his SN and now you've confirmed it - I never speak to him or read to him' it is so upsetting.

DontEvenThinkAboutIt Sun 03-Feb-13 20:34:48

Are you getting a proper diagnoses? Once you do then you won't have to justify anything.

lorisparkle Sun 03-Feb-13 20:38:53

I sometimes think people say things without realising how patronising, annoying or insulting they are being. Ds1 has a speech disorder and reading difficulties - possibly dyslexia. I get comments like 'my DC speaks so well because we speak to her all the time' or 'I think my DC reads so well as we have read to him everynight since he was little ' I feel like saying 'I had been feeling guilty about what I must have done wrong to cause his SN and now you've confirmed it - I never speak to him or read to him' it is so upsetting.

FightingForSurvival Sun 03-Feb-13 20:39:14

Yep. Diagnosis. Just got ours. Yes I am upset. But I've slept better last two nights than I have for two years.

lorisparkle Sun 03-Feb-13 20:40:06

Sorry don't know how that happened!

greener2 Sun 03-Feb-13 20:40:16

omg, yes that is so bloody insensitive. Just enrages you doesnt it. The thing is i do give people the benefit of the doubt, i explain myself and discuss etc and then they still say these things! My husband sat down with his dad to talk about our dd and he said theres nothing wrong with her. I feel peed off with him for dismissing us like that and have stopped going over as much as im seeting inside. Others just go on about their own kids,comapring them to my dd as if im ott. Oh and the cliches i have heard about autism is unreal!
I know i was uneducated about autism before and so i get this, but even after i explain about autism and its a spectrum etc they still dont get it!

greener2 Sun 03-Feb-13 20:42:14

Going through it now. On an at least 6 month waiting list. Problem is they way dd is even i wonder if she is autistic as it is so complicated, then they make me wonder and i go around in circles in my head. Limbo land!

FightingForSurvival Sun 03-Feb-13 20:51:12

Tbh now that we have diagnosis I am not planning on discussing too much as I know people will still make twattish comments. My mum's a nightmare,even though she is trying. She said to me oh it's a wide spectrum, not like if he had Down's syndrome where they all have the same problems. Err no mum they don't actually. Or my concerns about whether he should go to special school. She said oh don't worry he

FightingForSurvival Sun 03-Feb-13 20:53:02

... Wouldn't be with children worse, they will segregate them shock. Have to point out she is in her mid 70s and not deliberately ignorant, but even so, my god it's tough.

WarmAndFuzzy Sun 03-Feb-13 21:04:07

Yup, I so recognise the comments - we were told that we obviously didn't talk enough to our boys, maybe we should try to spend some time doing so (Doh! how could we not have thought of that before!). Some implications were made about possible child neglect by one of their reception teachers (we moved him to another school not long after). And we've been told we don't discipline them firmly enough/are too tough with them (delete according to preferred discipline methods).

Problem is that even after they were both given an ASD diagnosis some people (Cough DM) still won't believe it! At least the teachers can't get away with accusing us of neglect now, and are a lot more understanding.

ArthurPewty Sun 03-Feb-13 21:22:42

Message withdrawn at poster's request.

PolterGoose Sun 03-Feb-13 21:43:13

Had the same from family and 'friends', before and since diagnosis (for some reason people seem to think they know more that the many professionals involved in the diagnostic process) Have been told ds's difficulties are because he is an only child, because he is spoilt, because I didn't go to mother and baby groups, because I don't set a good example of socialising, that he would eat 'normally' if we didn't pander, that we don't discipline properly, that he would be better when he went to nursery, then school... It goes on and on and is shit.

However, there was a moment from getting that official diagnosis (during which the paed commented on our good parenting) when I felt so smug and 'I told you so'ish grin

greener it does get better, as parents we gain more knowledge and find interventions and techniques that help, we get more assertive and realise we have no room in our lives for those who aren't onside.

lisad123everybodydancenow Sun 03-Feb-13 23:25:32

Message withdrawn at poster's request.

Dinkysmummy Sun 03-Feb-13 23:40:58

Ok read the whole of this because the first bit is going to sound horrible...

My friend has a DS one year older than my dd. she was going though the diagnosis process with him. I tried to be supportive but was one of those that said "my dd is the same". Well, we dont really talk (if ever) anymore.
However now I know why i said that.. My dd is going to be assessed by CAMHS and so many are convinced she is on the spectrum. I feel so bad for saying my dd is the same (even though it was true), because that didn't help her at the time.

ArthurPewty Mon 04-Feb-13 07:38:37

Message withdrawn at poster's request.

signandsmile Mon 04-Feb-13 07:45:05

this has just reminded me, funny how you block things out isnt it...

stupidest comment came not from family but from a 'friend' (family have been great, if a bit slow to process/accept/understand at the begining)

ex colleague, (who managed a SW team working with foster care for children with disabilities) when told ds had speech delay and possible LD, said, it was surprising as he had two educated articulate parents.....

shock angry shock angry,

ArthurPewty Mon 04-Feb-13 10:49:15

Message withdrawn at poster's request.

blackeyedsusan Mon 04-Feb-13 10:52:19

limbo land is hard. it seems to take forever. lots of people are insensitive and try to reassure you with something trite... and fail miserably..

I hate the you ought to do....

porridgeLover Mon 04-Feb-13 11:25:11

greener, I know what you mean about the 'is the way dd is even i wonder if she is autistic as it is so complicated'.
My DS has a diagnosis, but I am worried that DD1 is also on the spectrum. Like a lot of girls, she 'hides' it extremely well. I have brought her to SaLT and for Psych observation but neither saw anything not even the failure to produce imaginative play as she sat with the dolls' house and furniture? hmm angry

I swing between feeling like a twitty fussy mum when I speak to school (although the Principal has been supportive enough) and feeling strong (because I did all this 'disbelief' and 'its all in your head' with DS).

The worst for me was when I plucked up the courage to tell my sister about DS; her remark was 'but he's fine isn't he?' and proceeded to ignore his needs entirely while we visited for a week. <stress heart attack emoticon>

DontEvenThinkAboutIt Mon 04-Feb-13 11:58:55

I would hope I would never make an insensitive comment about someone's DC but I can understand how someone may make a upsetting comment unintentionally. My NT DS's have many characteristics that overlap with autism. One barely spoke at school until he was 6 or 7 and has never ever done imaginary play. In fact he barely did toys at all. confused So, I could imagine, if I wasn't thinking and I hadn't been educated by MN smile that I could say something unhelpful. It doesn't make it OK but I can see how it happens.
IYSWIM

JeffFaFa Mon 04-Feb-13 12:07:36

I dont know if ds1 is asd probably not but he has traits and other issues definatly going on and nobody sees them but me, some people have started to say 'well yes x behaviour is a bit odd but....' and if you done such and such... or such and such....' then i think all would be fine. I doubt myself if there anything wrong i write everything down i analyze every thing he does but without any dx im stuck, i feel like being around NT children ds stands out but dont 'qualify' to do anything SN with him. I wonder why as as toddler he didnt point and wave and only lined up his toys or dismantled them into heaps, why was he still having occasional accidents until age 6, why did he INSIST on the same routine every day and have massive meltdowns if we didnt go along with it. I wonder why he developed tic like habits, why does he walk awkwardly on his toes and flap his hands, why does he only have an interest in dr who and toy cars, why does he want to watch the same episodes every day, why cant he sit still or walk why hop, skip and jump everywhere, touching everything in his path, why cant he ride a bike or run fast or be less clumsy but he can hop on one foot, jump and skip, why does he eat with his hands but have neat handwriting, why does he get upset in the rain if it goes in his face but like the feel on his head why get upset in the sun its too bright but like the feel on his skin, why does he get in everyones face and rub up against them, why dosnt he care about the feelings of others and when he does its pretend he only cares how reactions make HIM feel.....

but then hes 'normal' right he keeps good eye contact, he loves people and craves friends happily speak to anyone, why wont these people mantain a friendship with him though? why do they push him about but he still wants to be their friend? hes happy to play with others toys anywhere and with them he wants toys but if they are his at home then only dr who and cars will be entertained, his tic like habits arnt always there they come and go im sure he 'saves' them for home. He might be fine in the rain one day but not the next its not consistent at all. He lies pointless lies hes not very good at it but he does it. He may watch dr who ALLLL the time (daily for 3 years and counting) but he dosnt retain info from it infact he knows hardly anything about it so not aspergers like hes not a little professor or even all that intelligent even conversations are hard his lack of understanding is astounding why does nobody else see this?? hes almost 7 unable to read except for his reading book at school 2 lines to a page which im sure he memorises but he clearly manages fine in school for nothing to be flagged up, so whats the problem right? he plays now hes didnt as a toddler but he will sit with his dr who figures now and play, his imagination must be good because hes always seeing things in objects, he makes his sandwich into a bowtie, he pretends objects are other objects, he sees faces in his soup and his ice cream choc sauce looks like a spider.....

Limbo land is right here.

Miggsie Mon 04-Feb-13 12:08:59

People don't deal with disability or illness very well.
Sadly.

ASD is massively misunderstood...I've done a lot of reading due to having 2 friends with ASD children.

I'm a disabled adult and people still treat me as if I'm "making it up" my diability is joint based, so you can't see it. I get a lot of "you don't look disabled" - like I should have open sores and a begging bowl!!!!

With ASD children the differences are small to begin with, then become apparent later. If you feel there is something up, press for more diagnosis. Don't mention it to people who are acting like gits - that won't help you.

Other parents with ASD will understand.

I have also researched the effects of having diabled children on parents - it is massively distressing, especially when other family members go into denial. They would rather call you a liar than deal with reality, well fine, point that out to them and cease to raise the topic with them.

stickyg Mon 04-Feb-13 16:07:07

I hear you ladies ! My 4 yr old has been referred for a diagnosis, i first noticed something was wrong when she was 18 months and my inlaws just refuse to believe that she has autism, sometimes i end up doubting myself because of them ! It does my head in, i just dont bother telling them anything anymore, they love it when i say something positive about her but if a negative gets mentioned they dont want to know. Im sure they think im making it all up.

My daughter attends a communication unit pre school and will be going to a mainstream school where they have around 5 asd kids in each class therefore they have loads of help and support. The proffesionals say she wont cope in her local mainstream, but still, there's nothing much wrong with her !!! Argh i could scream sometime.

Its like autism is a stigma to them. I mean bloody hell, autism isnt ideal but you need to face up to it , deal with it, cope because you have to and make sure your child gets all the help and support they need.

Christ, sorry i went on a mini rant !

FightingForSurvival Mon 04-Feb-13 16:22:29

Miggsie that is so true. The differences are small at the beginning. ASD kind of creeps up on you. My son's speech was delayed but it was only really once his speech kicked in that his autism was more apparent to me. Though, looking back, the signs were there all along. I think some of my family members feel embarrassed now but to be fair, I was in denial with the best of 'em!

Gailforcewind Mon 04-Feb-13 19:35:13

JeffFaFa I am no expert but what you have described is almost exactly like my ds-everything from Dr.Who,same episodes etc,good eye contact,difficulty keeping friends,flapping,lack of empathy,great imagination,sensory issues etc etc etc.Differences would be ds has no problems with reading.The little professor euphemism doesnt necessarily mean they all spout lots of facts-often just means an intense interest in something.Ds certainly couldnt quote any facts about anything but would have a very intense interest in a few things.hmm.

It didnt cross our minds something was wrong until ds was around 8.
Ds was diagnosed with Aspergers at 9 yrs and is now almost 13.I would say it definitely gets more apparent as they get older and I would definitely advise an assessment sooner rather than later if you have concerns. It has made the world of difference to ds as both school and family now understand why he flaps,takes things literally,has no empathy,loves dr.who and star wars ad nauseum,etc etc.He gets help with social skills at school now and also needs help with remembering homework,organising himself,remembering instructions ie..bring pe kit tomorrow etc.
Getting an assessment will either confirm something or rule it out - No clinician will diagnose a child unecessarily and if there is an issue then definitely sooner rather than later.
I would also agree OP that the patronising comments really dont help from family and friends who 'just dont get it'. angry.

greener2 Mon 04-Feb-13 20:22:17

Its good, or maybe maybe not good to hear am not alone! Its so hard though to stop feeling so isolated in all of this plus i feel resentment towards people. I have distanced myself from people as i feel they only want the good parts (i.e grandparents to play with the kids and enjoy them) and i am like no, you havent been listening, you are not supportive you cant have the good without the bad. Hope you understand what i mean, i suppose im really angry with them. I cant stand having to go round and act as if everything is ok when ive had the worst year of my life and worry every day about my dd.

Limbo land is the worst thing ever! sad

JeffFaFa Tue 05-Feb-13 10:08:09

thanks gailforce, we are waiting on a referral from gp for ds its just taking its time, i didnt know that about the little professor, i suppose i imagined someone with aspergers being like sheldon from big bang theory or roy cropper in corrie, very intelligent, very literal and very quirky, or i imagine autism as not wanting friends, being withdrawn, high sensory issues etc. I know its not always case as ive read lots of parents on here whos children are all very different, but no matter what i read up on ds dosnt seem to 'fit' anything ifykwim. I hope the referral with shed some light on the situation, it seems horrible to say i want a dx for ds, that way there is a reason he behaves the way he does and maybe people will then understand.

bananananacoconuts Tue 05-Feb-13 12:49:09

i started a thread a few weeks ago titled why will no one fucking listen to me, as i'd just been to the doctor regarding ds and he basically dismissed me and said tell the school nurse to see you. i am not allowed to refer! (plus ignored my diary and list of symptoms)

i am so alone in my quest to help my son that i even question whether it's just me and i need to accept he's the naughty, disruptive child in class and thats why nobody wants to play with him (even though they love his sudden bursts of silliness).

i have a meeting with school nurse tonight after school after talking with class teacher. she is happy to assist but does seem to be under the impression that he's just wild!

i'm depressing myself now but just wanted you to know op that you are not alone. even though we feel like we're swimming in soup we will get the best for our dcs

BiddyPop Tue 05-Feb-13 13:45:40

All I hear about it that lots of kids are like DD and that "I'm sure she will grow out of it when she's older".

DD is HF Asp, so lots of her obvious behaviours could be seen as bored, rude, .... but she is also very much aware of behaving "well" in public so others generally don't see the results of her dealing with stressful situations (she waits until we're in the car or at home - or left an event and walking in public but where she's only interacting with DH and/or I, before she has a meltdown or kicks up a fuss about it all).

And I KNOW there are lots of kids who behave similarly (many of whom are ASD, many of whom are NT). But I also KNOW what the nursery, school, GP, psych, ed pysch, etc have all told me about my particular DD and her particular traits.

Aaaargh I am totally there with you. Before DD's diagnosis I was so frustrated with it I was having recurring dreams where I yelled at everyone I had ever met in my life ever just to listen to me!!!

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