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easier to say about ds he has asd then saying he's autistic

(45 Posts)
mysonben Tue 08-Sep-09 19:09:18

DS has mild asd, i can accept it and say it. I know perfectly well that asd represent the broader view /image of autism.
So when i get relatives saying to me "your ds isn't autistic,... do you know what an autistic child looks and acts like!" shock
i simply cannot bring myself to take the bull by the horn and say "actually i do, probably more so than you! And yes ds is autistic, mildly autistic if you prefer to hear that"

Instead i let them believe that asd is sort of a separate thing to autism.
I appreciate their idea of autistic is probably that of a child with severe autism.
if you compare ds to a severely autistic child then yes they will be so different in some ways , but they will have the same core issues and impairments but at very different levels.
Now i'm seriously rambling...blush

I just don't know what to say when i hear that mild asd isn't autism! hmm

daisy5678 Tue 08-Sep-09 19:28:46

I know a lot of parents of kids with milder ASD just say that their child's on the autistic spectrum. Cos it is a spectrum and it sort of makes that point.

tbh, I've stopped caring what people think these days! He is what he is.

Goblinchild Tue 08-Sep-09 19:32:53

Some people hear' autistic' and they instantly have one image of classic Kanner's autism.
Or they want Rainman revisited.
Pick your fights though, ignorant relatives are infuriating but I find ignorant professionals are the ones that have me honing my blades!

waitingforgodot Tue 08-Sep-09 19:33:13

Yes, it is probably easier to say" he is on the spectrum" if they think Autism and ASD are 2 different things. What would happen if you told them the truth?

BethNoire Tue 08-Sep-09 19:39:31

Mild asd i autism; of course it is.

ASD / autism is a complex little beastie. take 50 kids and they will all differ. DS!_ AS- aggressive,SPD, sensory issues, far harder to cope with daily than ds3- moderate autism, little clear langauge, SNU.

I type ASD on here, it's less letters.In RL I use autism generally, I rarely use Asperger's as despite that being what DS1 has, there's an accompanying image that really doesn't do him any favours- people think of Einstein, Bill Gates, Silcone valley: DS1 is clearly and plainly none of those things!. His DX btw is AS / HFA.

I suppose like any term it is functional, you have to work it a bit. You may as well work it to suit you, as it will be used against you happily by some.

Also remember that family members are often in the biggest denial of all, just go with what they can accept and write it off in your mind as beyond worrying about.

Shells Tue 08-Sep-09 19:46:59

I'm like you Bethnoire (love the name) as DS has AS diagnosis but I generally don't say Asperger's to people as they come out the Bill Gates stuff, which is frankly NEVER going to happen - we'll be lucky if he learns to read!

'On the spectrum' is usually what I say or if its an older person, who might know less about it I say 'he's autistic'. Simpler all round.

Its a mine field though as everyone seems to have an opinion usually via rainman or some collective wisdom from god knows where about ASDs and are happy to share it with you when they're CLEARLY not experts. Drives me mad.

lingle Tue 08-Sep-09 19:48:11

Tricky one. My children will both (I believe) lead normal lives and have excellent life chances. Neither has a disability. But both seem to have some key neurological characteristics in common with some (only some) of the severely affected kids on this forum (those with a very language-led autism IYSWIM) - more so than they do with their NT peers. And those characteristics mean I have work to do if my kids are not to fall further behind their peers in certain key skills. This work is finished with DS1 but DS2 has, quite literally, "special needs".

I quite like explaining that to people. They rarely attempt a reply smile

mumslife Tue 08-Sep-09 20:07:52

Message withdrawn at poster's request.

mysonben Tue 08-Sep-09 20:07:57

Yes, i have tried explaining to relatives in nice , easy to understand ways like a few videos i did of ds relating to him as a child with asd , and another one explaining more waht the spectrum is all about.
Still they don't or won't get it.
So i'm still wasting my time and breath.

It's true people who are not in the asd environment or so to speak have clearly stereotyped ideas about autism.

(ie: rainman or a child totally withdrawn into his own world,...)

they don't know about the triad of impairments and that ds ticks the boxes for the three.

sphil Tue 08-Sep-09 20:48:47

Yes, I sometimes say DS2 has 'special needs' or has SLD. Although he scores on CARS etc as severely autistic, people often look at me askance if I say this, because the general view of a severely autistic person is not DS2 - calm, cheerful, smiley, flexible etc.

Actually, it is what I really think too, not just a social comment - his SLD is far more disabling than his autism, iyswim!

mysonben Tue 08-Sep-09 21:05:01

Yes, iswym. Atm, it is obvious to everyone (including the disbelieving relatives) that ds has some learning difficulties, and is quite speech delayed. So maybe i should stop mentioning the asd to them altogether.
I can see on a day to day basis that ds struggles with learning, everything has to be so clear and repeated many times for him to get it.
This upset DH a great deal, he always comments "god , he should know that by now!!!..."sad

Davros Tue 08-Sep-09 21:22:13

I have been known to roar "he's handicapped" at stupid people in shops who won't allow me to simply say "he's autistic" or "he's got special needs" or even "he's disabled". But in day-to-day life I refer to DS as autistic but he does have severe Kanner's autism so it isn't confusing (usually). I know the PC version is "has autism" but other people can stick to that, I'll say what I want and what works and what also jolts professionals sometimes. Over the years you practise what you say and how you say it and will arrive at what you feel comfortable with and that may change over the years. I wouldn't worry about people who don't "get it", just make sure you find something you understand and are happy with.

GreensleevesFlouncedLikeAKnob Tue 08-Sep-09 21:25:49

I wonder about this

I say ds1 has Aspergers because that's his dx, but sometimes if I think people won't know what AS is I say he has ASD

I would never say "he's autistic" because I think it would be misleading - I had a brother who was severely non-verbal autistic and it was not the same thing at all

but the SENCO at his school will say things like "yes, that can be very difficult for an autistic child" when referring to ds1

so I dunno grin

Seuss Tue 08-Sep-09 21:38:10

On here I say he has ASD, in RL for a long time I used to say he had speech and language problems - simply because that was usually what led people to ask in the first place. Nowadays I normally say he's autistic or on the autistic spectrum - any explanations I give are usually based on whether I think someone genuinly interested or is just being nosey!

Barmymummy Tue 08-Sep-09 22:08:24

I still struggle to get the words out myself because if I don't say it then it won't be true. sad

However, when I do talk to someone I tend to say he is either 'on the autistic spectrum' or has 'speech & communication difficulties'.

Neither make me feel comfortable to be honest but thats because I am still having the daily struggle to come to terms with it all....but thats my problem and I am trying very hard to work at it sad

Lovesdogsandcats Tue 08-Sep-09 22:48:56

mumslife would you mind explaining your ds behaviour and who diagnosed mild Aspergers please?

mysonben Tue 08-Sep-09 23:13:20

The thruth is i have never said to anyone friends or relatives "ds is autistic".
When talking about ds i will say "his issues,...his problems,...his SLI,...or he has asd" becuase the word autistic somehow seems a bit too strong for my ds's problems, iykwim?

But it really gets my back up when people try to dismiss or play down his asd issues as being something else than autism, simply because they don't know or understand.

Seuss Wed 09-Sep-09 09:45:45

I would prefer to say 'ds has autism' to 'ds is autistic' and it puts my teeth on edge a bit when dh says he is autistic. I'm not sure why as I have no problem with people knowing he has autism/is autistic. I think, to me, when people say 'ds is autistic' it seems a bit all autistic kids are the same, whereas if they say 'ds has autism' the autism is just one part of my ds. If that makes sense.

Seuss Wed 09-Sep-09 09:46:52

Actually I'm not sure it doesgrin - ignore me I'm procrastinating cos I have jobs to do!

BethNoire Wed 09-Sep-09 09:49:56

Barmy it comes in time, you can't force it.

I do find with ds3 it is easier to say 'he has speech issues, or een just 'he can't talk' (he can, in a limited fashion, sometimes, but not usually to strangers anyway). So many people seem to have confused their NVQ in accounts with a Paediatric diagnositc qualification in ASD and want to enlighten me with why the boys aren't actually asd at all. Comments vary from 'but he can talk'- er yes a necessary for a dx of HFA / AS in a 9 year old in fact, have you not been reading your DSM lately madam? wink to 'but he's so nice'. Dammit yep I got it wrong, clearly he's fine and the NHS, LEA, DLA and every support organisation going missed that. Buggery. Now ds1 stop messing about and drop it, ds3 you can talk so just do it off you go ah that is solved then.
Prats.

BethNoire Wed 09-Sep-09 09:50:30

Oh yes and my eprsonal favourites-

I get it scarily often-

'But they can't have ASD, they have such nice curly hair'.

grin

Barmymummy Wed 09-Sep-09 10:53:57

hehehee, that has brought a grin to my face grin People can be so dense!!

BethNoire - thanks, am trying my hardest and am expecting alot of myself in only 4 months I guess. I am getting better though, slowly smile

mysonben Wed 09-Sep-09 11:42:54

seuss, your post did make a lot of sense grin, i feel absolutely the same with ds' asd , it's only a part of him. As i 'm sure many of us feels like this too.

barmy, slowly it will get easier, it is such a difficult thing to take on board, i still have my doubting days, and my sad crying days,... like you it's only been a few months since ds' problems have a name, and "asd, autism,..." is a pretty scary name to hear when it's applied to our dc.

debs40 Wed 09-Sep-09 12:01:17

Mysonben - try not to get wrapped up in labels and names for things. My son's teacher said to me last week, 'I look a the child not their label, and try and understand them' and I found that important. It's how we should be with all children really.

Yes, as parents, we might have to accomodate things that you wouldn't with an NT child, but that's because routines, or sensory issues such as what clothes to wear are important to that child. That should be a good enough reason for doing it. We don't need to justify it to others any more than that.

Even if your little one is eventually diagnosed after you have gone through the whole CAMHS thing (what joy grin!) this need not change the way you help him or the way you explain it to others.

Davros Wed 09-Sep-09 12:30:44

Some years ago we took DS to visit Grandma in hospital. A lady came in with a tea trolley and asked DS if he wanted anything. When he didn't respond or even acknowledge her, Grandma hissed behind her hand "he's a little autistic today", bless! It made us laugh. She didn't get it but she did love him. He then stripped off and got into the other end of the bed with her, mind you he was only about 5 then!

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