How do you deal with people who say 'oh theres nothing wrong with him...'?

[allaboutme]

DS has been being assessed for ASD for almost a year now.
A few friends and family know about the assessments. I've had a fair few comments along the lines of 'oh I dont think theres much wrong with him' and 'He's doing really well, I dont think theres anything wrong'
I think people are being nice and trying to be re-assuring.
But I know there is something there and the comments make me feel a bit like people are saying 'you are making this up, he's fine' type thing.

Today DS has his review with paed and she said that she is fairly sure he is on the spectrum. She is calling a multi disciplinary review asap for formal diagnosis.

I told a friend who I met straight afterwards and she said 'but you'd never know, it doesnt seem as though there is anything wrong with him to me!'
I find myself saying 'well, he does X and he struggles with Y' but its all little things and makes me sound petty. Its all the little things that add up really and I just never know what to say when put on the spot like that!

Will have to tell MIL in next few days. She is a lovely lovely MIL, but adores DS and thinks he is absolutely fine, not worried about him at all etc.

Need to think up good responses in advance I think!
What can I say, that doesnt belittle the fact that I think its important to acknowledge that he has ASD, but also doesnt run down DS and go on about things he is not good at iyswim?

I dont really know what to tell you. This has been going on for me for years.

DS has LD and has just been DX with Auditory Processing Disorder. He has always struggled, always been behind meeting his milestones etc.

He is one of 4 (soon to be one of 5), I have been a mum for nearly 18 years, have been a foster carer and am now a portage worker so have some experience with kids

BUT people that see my DS twice a year, have only met him once, dont have any children etc still think they are better qualified than me (or peadiatricians, teachers etc) to say 'oh hes fine, all boys do that'

It gets to the point where you feel like you are putting your child down just to convince people that there are some issues.

Mostly I ignore. If a friend says 'oh my ds does that' I sometimes point out that there ds is 4 years younger than mine and that usually makes them see it in a different light.

If someone says 'theres nothing wrong with him' I say 'I know there is nothing wrong with him, but he does have difficulty with so and so due to his condition/LD'

People are usually trying to make you feel better but it doesnt really feel like that. Some people like to launch into their theories about 'we didnt have ASD, ADD when I was a kid, I think parents use it as an excuse for not looking after their kids blah blah blah' Those I just walk away from.

On one or two occassions I have asked for some twits phone number 'so I can pass it on to DS's peadiatrician, I am sure he would love to hear all about your theories'

God yes, I had this - from family as well. They think they are helping, or are they in fact just preferring to say there's nothing wrong as it's easier than facing the truth head on and having to get into the whole subject of SN. Is it in fact part niceness, and part can't-be-arsed to sympathise or understand? Now that my boy is 6, still largely non-verbal, and with lots of odd behaviours, they are not saying it any more...!

my dad used to say all my ds wanted was a good smack and it was bad parenting despite the fact my dd1 was perfectly well behaved he was only diagnosed with ADHD back then but he couldn't understand about how far behind he was he's at the level of about 9 years now and definitely has asd but psychiatrist won't diagnose him as he interacts with his carers.
Its really frustrating but he'll not get any more than hes getting if he gets a diagnosis

with people you are really close to, I would just be honest. Something like I appreciate you might be trying to make me feel better / reassure me but really.. I'm aware of the problems he has and am trying to get my head around the likely diagnosis. I don't want to be trying to stick my head in the sand.. its not that helpful or constructive

I said something like that to a close mate in similar situation. I wasn't aggressive or curt - just told her how I felt. She apologised and admitted she was desperately trying to make me feel better. I thanked her for being a good friend who would just listen to me

I ask them when they qualified as Clinical psychologists.

My sister is just starting out on the road of possible diagnosis with DN, ASD or ADD she suspects. When we've spoken about it a few times I have said things along the lines of it 'looking like it would be up the milder end of the scale for want of a better expression' only because he stays with me for weekends and doesn't stand out, but I do add that as she is with him 24/7 she is therefore best placed to make those judgements. I only say this because I guess I am reassuring her, I have added that I'm not saying it as in 'thank god he's not further up the scale' ifswim, just giving my feedback, but do acknowledge how frustrating it is when people seemingly make light of day to day difficulties she, and other parents may be having.

had this too! i am rather inclined to smile sweetly while thinking "your a fuckwit"...makes me feel better anyway.

you do (unfortunately) get used to it and at some point i actually stopped feeling the need to go into great detail and justify myself. not sure when that happened though..he is 18 next week!

It just isn't nice to hear people say things such as 'there's nothing wrong'...it is down right patronizing.
We used to get a lot of this when ds was about 2.5 (he spoke less than 20 words then), we used to hear 'oh he is a boy, boys are lazy,...there's nothing wrong he 's just a very difficult stubborn toddler'...
Now ds is 4, we are going down the route of asd assessments, and we still get the odd comment 'he'll catch up soon,....look he loves cuddles and smiled at me he can't be autistic,...'
What a lot of bull... people who don't know nothing about the condition and who see DS once in a bluemoon think they know better.

I just try to ignore them, cause it isn't worth getting upset over it.

I'd go along with Herjazz and just say 'thanks for being nice (big smile), but actually he/she DOES have a disorder.'
And then maybe 'would you like to find out more about it? I could send you some website addresses?'.
That shuts them up sometimes.

I think in the past, pretending disability did not exist was a very common approach - tartan rugs placed over calipers when family photos taken etc. I think older people are still uncomfortable about disability being openly discussed - but they don't see this as a sign that they are ashamed of the child but they will claim that it is best for the child to be 'protected' by well meaning lies.

i ususally point out that they wouldnt think DS was ok if they saw him having a tantrum like a 2 year old and that whilst their child may also display some of the behaviour DS does that their DC may also learn from mistakes and understand compromise and warnings etc. Then i invite them to take DS home with them for 24 hours! That usually sees them back tracking on thier comments! LOL

I had this. My sister said "How dare they say there's something wrong with my niece. If they said that about my son I'd be livid." I replied "Well, she's my daughter, and I am absolutely sure that they are right.

Now I can just say "MRI scan" - can't argue with physical fact.

what cyberseraphim said. I had terrible problems getting any info out of my mother before our genetic appointment: suddenly she had never had any aches and pains, but had always been a bundle of energy and strength jumping from crag to crag. Not the childhood I remember...

Part of it is annoyance at the suggestion that dcs have inherited a condition from her (but your dh walks funny- don't you think it could be from him?), but mainly I think it's because her coping mechanisms have become so ingrained (oh, it's just me again, having a funny turn, never mind, let's talk about something more interesting).

I blame the focus on the so-called "traits". So long as this continues, a fair subset of intelligent people will apply their common sense when it comes to borderline kids as follows:

1. I can't see anything obviously wrong based on my observations.
2. apparently the child has a syndrome because s/he displays this "triad" (ooh-er what's one of those?) of "traits"
3. But I recognise all of the "traits" cited as examples as behaviours I've seen in other children.
4. Therefore, I'm sceptical and I certainly won't accept any suggestion that this is a lifelong condition, as all the other kids I see grow out of these "traits".

I've been on the receiving end of painful comments myself re DS2's language and showing/being shown problems - but from someone whose intellectual and compassionate credentials I rate very very highly, and whose husband works with adults with SN. This makes me think: "has my good friend had a personality transplant and become a tosser, or do we need to re-examine the way we explain these conditions?"

Doubtless however cyberseraphim is right too.

I am not good at responses on the hoof, but I have found the most supportive comments from others have been the ones that acknowledge ds differences whilst remaining positive about ds and our parenting. For instance it is nicer to here 'ds is a lovely child and is doing well with all your hard work'. It takes a while for family and friends to do this. Phrasing my concerns this way sort of helps as they are free to resist negating my cconcerns.

It used to really get to me. Especially when the HV told me - 'Don't think of him like that, he's a lovely boy!'. That really made me feel shit! And I really agree with the feeling like I'm putting him down to prove there is something.

I am better at shrugging it off now. My family have now accepted it which makes it a bit easier. My dad was adament there was nothing wrong, until he went for a job working with a lad with ld, and wanted to know all the list of ds's problems so he could quote it as experience.

Last ngiht I was telling the boys brigade that ds is going to be dx with autism, and they were like, oh he's been fine here! Then he decided to throw himself on the floor, lose his speech and eye contact before trying to bolt twice! I think as he is getting older and the behaviour is a bit more obvious it is harder for people to deny it.

We have had comments such as "How did you wangle that one" (having dd registered disabled), "She does not look disabled" or from the council, "She is not as disabled as, say, a child in a wheelchair".

The comments really sting but you learn to become immune to them. No one sees the work at home, the wet sheets, rooms destroyed, tantrums and unusual behaviour. No one sees the bewildered girl trying to make sense of an odd world.

We have stopped trying to justify the problems to people.

Ah yes, I get the he is not so bad comments about my boys all the time. 6 year old ds has asd/adhd and almost everyone who meets him thinks that he is just fine, except for his respite workers, me and dh, autism outreach worker, psychiatrist, teacher and his lsa. Apparently everyone is wrong in their expert opinion {hmm]. I have learned to say things like, 'no he is not so bad, he has asd and adhd. ' etc.
My 4 year old has autism and goes to a special school on a bus, and apparently we are mad, he does not need a bus to go to school, he will soon learn to speak and he seems so happy, he is fine. Yes he is happy, happy and autistic. Yes, autists are happy, the rest of the world is miserable, says I.
Are you sure your 3 year old is not copying of his brothers, seems to be the newly aquired phrase, oh yes that is why he hides under the table with his eyes covered and his back to you when you are here. That is why he will freeze in the cold and wet rather than get his dressed again after he has taken his clothes off for the 10th time today.
I just find it better to ignore everyone. Other wise I am in danger of snapping. Then I would get more of: if you weren't so stressed out all the time, maybe your boys would cope better, they pickup on all the stress you know" Why thank you oh wise one, that has really helped me
As for my in-laws, apparently my boys are autistic because of some evil committed in a previous life by myself and my sons. So I just avoid them, their loss.
Dd is now two months old, and I have also had, 'oh well at least she is perfect, nothing wrong with her" from sil.
'All my children are perfect, silly cow.
I think people just like to have an opinion, especially if you let them.

Even when you do have a wheelchair, they want to know how you wrangled that one! ANd the blue badge, and the motability car...

Yeah, he's jsut lazy really and pretends to flop to the floor!

The best one I heard on the wheelchair front actually came from a doctor (in fact, I've had from at least two different doctors):

"I am not happy with the idea of using a wheelchair, as it will only make her think of herself as disabled"

(What you mean you think she won't notice when she's crawling up the pavement on her hands and knees?)

pffffff cory - you should have suggested a chariot so she could think of herself as boudicca instead! Oh dear..

been thinking about this one a bit.. thing is, we'd be pretty gutted if this was flipped over and people were too eager in agreement. I mean, to go back to my own example I think my friend was trying to counteract all the harsh, negative and utterly devestating stuff we'd been told. Like the HV would tell us dd was dysmorphic and clearly 'not right' , my friend would try and normalise the situation a bit.. (she looks LOADS like you, all babies are floppy / have soft heads / don't do anything/ can often look a bit blue / twitch and jerk etc) We had a diagnosis v early on, but I think my friend just wanted to give us a bit of hope. My mom would say stuff like dd will rewrite the book.. alas she hasn't

And yknow, I reckon I may have done this to other people in turn. Like the example of a 2.5 yr old saying 20 words. A couple of years ago I would have thought that was brilliant.. absolutely inspirational. Cos my only experience was of a child same age that never so much as made 'dada gaga' babble sounds. Gawd my intention would have not been to negate their worries.. or to trump em in the disability stakes.. I just genuinely would have been really impressed with that (I once enthused to a mother of nt 1 yo how grand the child was doing cos she could sit up!)

I have quite a few friends who have dc with various disabilities - a few have multiple and profound disabilities - and we all try and be really positive about what our dc ARE doing and talk about each other's lo in that way. Not in desperate pollyanna way but just in a noticing and complimenting the little things

Only one of my friends aplogised for trying to convince me that I was wrong to think DS1 was autistic ( this was pre diagnosis) but I said to her 'Well if you told me you had a lump in your breast, I would not say 'Oh let's go and pick out a headstone'. Over optimism is a part of the human condition. She also said she genuinely did not think he was autistic but admiitted she knew very little about autism.

In my head, I sigh and remind myself that they mean well but generally speaking, outwardly, I try to be neutral.

It is just too exhausting explained to everyone just exactly how and why ds has a diagnosis of asd and that we do not use that diagnosis as a 'label' but to make sure that ds can get as much help that is appropriate for him.