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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

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

44 replies

mysonben · 08/09/2009 19:09

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!"
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...

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

OP posts:

waitingforgodot · 09/09/2009 13:10

Your sister sounds very competitive mysonben.
Rise above it.
How do you explain to family members that DS will not be "cured"
eg "oh yes DS is behaving much better. I think he will be cured soon."

debs40 · 09/09/2009 13:29

Your sister does sound difficult. Sometimes this can be because people like to judge (even family) and others feel uncomfortable when you pick up things about your own children which they feel they would never have picked up about theirs.

There is the denial aspect too. People like to think it will all be alright in the end. Hopefully, it will but it still leaves the same problems to manage!

You are going to get no joy from her. I would not even get into these conversations with her and just stick to saying firmly when issues arise 'sorry but my son needs extra help with shoes, dinner, or getting changed or wearing the same underpants forever' etc etc

That way you present it as a fact not something inviting her comment!!

BethNoire · 09/09/2009 13:33

'"if he doesn't say it yet, he might never say it!" ... '

Les Bolleaux, ds3 was about your little ones age whhen he first said I love you- there was a sign up at BIBIC at the time saying 'imagine if your little one never said they loved you' or somesuch, reduced me totears several times before then, but it did happen.

These days he'smroe likely to choose CBeebies or the PC over me but hey ho.

saintlydamemrsturnip · 09/09/2009 16:34

I think people don't understand what severe autism is either though. I have been told that my severely autistic, non-verbal aged 10 son must be 'only a little bit affected because he is so good looking'

I tend to just say he has learning disabilities or 'he can't talk' these days.

Original poster

mysonben · 09/09/2009 16:51

SaintlydMT, it's all down to "autism the invisible disability" isn' it?

I read somewhere , (think it was Maureen Aarrons "handbook of autism"), that children with autism were often very attractive children, with a natural beauty.
Very sweet and maybe too...
The paed. wrote on ds's last report "DS is a beautiful boy with problems relating to,...blah blah"

OP posts:

BethNoire · 09/09/2009 18:03

Very true MrsT. the understanding is so lacking at alllevels of affectedness and fundtioning. At least my DS3 has access to a SNU so that his education is appropriate and he has some protection from the ignorance, poor ds1 has no such luck.

Macforme · 09/09/2009 19:37

I find the label I use depends on the company..
My son's diagnosis is autism and moderate learning difficulties but that means diddly squat to most people.. he is chatty but obviously odd (repeats stuff over and over or launches at strangers with his obsessions) .

To people with some knowledge I say..yes he has autism and MLD' to complete strangers who he is accosting I usually (if they are being nice but look a bit freaked (as he is very tall-5 ft 8 at 12 and in your face!) say that he has learning difficulties and autism..like Rainman.

Yes it's a stereotype..but it's also a very understandable one for people who meet my son as he IS Rainman like (but much better looking lol)

Sometimes I say 'Aspergers' to people who think that all children with autism are non verbal.. but he's not as his cognitive abilities ARE significantly delayed..

and sometimes I say.. 'he's Charlie!'

benfmsmum · 09/09/2009 22:24

I don't really mind what "label" is given to my son if it gets him the help he needs!

Temple Granding says autism is a diffability not a dissability as they just see the world differently to others and who is to say who is right?

brokenspacebar · 10/09/2009 12:57

macforme, that is what my ds is like, but he is 5.. I do find it a wee bit awkward in the playyground, when we are waiting on dd finishing school. I get chatting to other parents, I can feel their ?? re my lovely, in your face, sweet but slightly odd, ds... we have an "asd traits" from consultant paed, as ds hasn't done the ados yet, but I would say he has mild asd, plus mld.

Family are either aware or in denial.

troutpout · 10/09/2009 13:13

I rarely have to say it tbh. If i do i say he has 'aspergers' or 'special needs' or is on the 'autistic spectrum'
Sn...seems to cover it for me in most cases.

sphil · 10/09/2009 22:14

God, I get the 'beautiful' comment all the time! As in 'but he's so beautiful'. Have had it in paed's/social worker's reports too - it makes me a bit . I can't imagine anyone writing a report about DS1 (more or less NT)and saying 'beautiful' - they usually put a comment about his personality - 'DS1 is a cheerful boy' etc which is fine.

They ARE both beautiful though

Jo5677 · 11/09/2009 16:16

I hate that whenever i tell someone my son is autistic they often then say 'oh like rainman,so is he really good at maths or something like that then?,autistic people are often really good at maths'.
I hate that stereo type,especially as my son is almost 8 and can only just count to 20.
Then if i have to go into further detail (he can interact quite well,but isn't very academic,can't read yet) and i say he's more on the mild end of the spectrum they then look at me like i'm making stuff up or excuse for him.
Even some of my close family and friends have real difficulty understanding that autism is a spectrum....no matter how many time i explain.
It is really frustrating.

Original poster

mysonben · 11/09/2009 16:27

Yes, it's frustrating indeed.

When my mum says "i can see he 's delayed and quirky in some ways, but he's not autistic!"
(she has this idea that all children with autism are very severe, and she tells me that DS is very different to them!
(By the way, mum has never personnaly known a child with asd before DS)
So i try to explain that they are not so different, they have the same core difficulties, only at different levels.

But she doesn't get it.

OP posts:

Jo5677 · 11/09/2009 16:39

My Mum tries really hard to understand, my Dad on the other hand bless him,always insists my son is just 'a bit slow,and will catch up eventually'.
I can't work out if he's in total denial that his grandson is autistic or if he just genuinely can't get his head round autism and an autistic spectrum.
Either way i've given up trying to explain,it doesn't stop me feeling a bit let down and sad at times about it though.
When i do feel like that though i just give my son a big hug and get on with being his Mum.
It's just a shame that sometimes even the peole that are closest to us don't get it or get what we're going through.

Original poster

mysonben · 11/09/2009 16:50

Very true, would love more understanding and support from family.

But at least i have this board , which really helps

OP posts:

pagwatch · 11/09/2009 17:20

The thing is it is so very complicated but what I have learnt is that it gets easier as we become more relaxed and comfortable.
So I can easily explain DS2 to anyone from a Paed to a rather dim waiter.
I love the rainman thing.
There have been funny threads on here about people response.
When asked if DS2 had a special gift like Rainman I used to say " farting" but a MNer had a much better one which I nicked which is to lower my voice and whisper
"he can fly!"

Looking back at the odd tight conversations I had with relatives who kept trying to assure me that DS2 didn't have autism I think it is a mixture of denial and their desperate need to comfort you and keep you from freaking out. It is a kind of knee jerk reaction because they have no earthly clue how else to react.

It is a bit like the way people react to news of cancer in a loved one - to either avoid or to insist that they "fight it and be positive"

It is just human. I try to see their trying to cope in their reactions rather than be as annoyed as I perhaps could be that by refusing to accept the truth about my son they avoidthe need to support me or deal with it.

Barmymummy · 11/09/2009 17:32

at the 'fly' comment....thats hilarious! Got to remember that one!!!!

pagwatch · 11/09/2009 17:34

i wish I could remember the MNer so I could give credit. It was so brilliant. I have used it often...

brokenspacebar · 14/09/2009 09:33

good post pagwatch, love the whispered "he can fly" comment, lol.

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