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How Do You Support Parents New To Autism?

(34 Posts)
JakB Thu 21-Jul-05 17:47:34

At the toddler group today, there was a very 'raw' mum whose son is going through a diagnosis of autism. It's so difficult, particularly as my DD is so severely affected (I was gushing about his fab playskills- ie: pushing the train around the track and not just stimming on it!). She's finding the whole thing very hard. She's read Let Me Hear Your Voice and I couldn't hide my despair at that book which I personally don't like (and then I felt bad for making her feel bad). Then she said, 'And what happens about job applications?' And I thought she was about to tell me about a job she was applying for. "I mean, will he have to say he is autistic on the application?" I have to say I was kind of speechless. What do you say? She doesn't want the diagnosis and I was trying to, gently, say that it opens doors in terms of intervention. Help!!!!!!!!!!

stacijc Thu 21-Jul-05 17:49:23

i worked with an autistic boy for a few years and his parents asked the same things. I can't remeber the name of it (sorry) but thees an autism association and i willl find the name of an alternatoive book to read.

Autism is very varied with some ppl worse than others. however, all autistic ppl excel at something....i will ty and find the book.....

stacijc Thu 21-Jul-05 17:53:24

http://www.autismtreatmentcenter.org/contents/learnmore/where_is_raun_kkaufman.php

its american i know but i used the son rise program and they do worldwide tours for advice....its his own personal story too so will help.

Don't forget there are different types of autism.....not all scary

hth

Jimjams Thu 21-Jul-05 17:56:31

oh dear jakb

Stacijc Autistic people do NOT all excel at something (unless you mean things like screaming loudly, or hitting themselves or spotting when a window has been left open and then screaming about it).

Jimjams Thu 21-Jul-05 17:58:19

JakB in that case I think you have to just wait. Dpo you have an info pack or anything that you can pass onto new parents.

I know what you mean though- I met a mum recently with a newly dxed (and gorgeous) 2 year old. She is very together about it (already started ABA!!!!) but I was worried about introducing her to ds1 thinking it might scare her. Luckily it didn't.

JakB Thu 21-Jul-05 18:03:45

I think DD did scare her a little bit. The mum just stared at her as if she was not of this planet! I've told her that if she wants any advice she is welcome to come round for a coffee. Her little boy is gorgeous and I could immediately spot potential! But she doesn't want to hear me being positive at the moment because she's clearly really grieving. Very hard

Jimjams Thu 21-Jul-05 18:10:00

I think you just have to give her time..... Was it completely out of the blue for her then?

Sorry was a bit blunt about the special skill.

JakB Thu 21-Jul-05 18:18:20

Livvy's current special skill is teeth grinding .
Anyway, yes, will have to give her time. He's definitely autistic, I would have said, so I think a diagnosis is inevitable. So difficult, isn't it?

Davros Thu 21-Jul-05 19:49:45

Oh dear JakB, I know just what you mean. I am able to give people lots of info but when it comes to glowing accounts of high achievement in our own lives, well! People do find it very hard when most of the old timers they meet do not have "normalised" kids with special skills but what can we do? We can't lie or pretend things are otherwise. I just try to limit my input to info and support and not talk too much about DS or my friends' children. SHe is a bit extreme though with the job application question, that's really hard to deal with. Is there someone newer to ASD than you who she might be able to relate to better iyswim, not that she can't relate to you (yet) but she prob needs someone in a different place if you can find one.......

JakB Thu 21-Jul-05 20:09:03

Yeah, I think I'm too 'planet autism' for her! She's obviously finding it very hard to come to terms with. RnB, do you reckon you'd be gentler with her?!

JakB Thu 21-Jul-05 20:11:16

Sorry, don't mean you're 'newer' to it, RnB, just that your delectable DS is less scarily severe than DD, IYKWIM?!
Oh God, what a nightmare.

JakB Fri 22-Jul-05 08:52:23

Sorry, RnB, just re-read this and worried I've caused offence! I meant, this mum who is new to it will be uplifted by meeting your DS as he's made REALLY amazing progress.
It's been a long week and everything is coming out wrong!

Jimjams Fri 22-Jul-05 09:08:47

I knew what you meant jakb!

monica2 Fri 22-Jul-05 10:37:23

JakB I wouldn't tie yourself up in knots over this one (you have enough on your plate) there is only so much anyone can do to help. Where there any other ASD kids there so she can get a good overall picture? Was she aware that many of dd's behaviours are down to her SLD too? This may soften the blow a little. Perhaps you could point out dd's positives (apart from her cuteness of course) ie very affectionate, no aggressive/challenging behaviour, placid personality etc. Find it hard to see anyone having a scared reaction to dd (but then I am allowed to be biased)

Not so sure about RnB's ds being less scarey to someone new to autism though, last week we were both struggling to deal with a huge meltdown over the exact positioning of some plastic food!! Don't want her throwing herself off the pier

JakB Fri 22-Jul-05 13:28:30

Monica, I think the reason she was scared was due to the fact that DD is two years older than her little boy but has no spoken language and still only rudimentary understanding of what's going on- not any specific 'behaviours', IYKWIM. I told her I knew children who had made amazing progress and she said, 'what do you mean? Are they at mainstream school with no problems?' (oh dear!). I also think, having met quite a few kids with SLD who are NOT autistic that DD's autism dominates her learning. It is her autistic impairments and her sensory problems that get in the way of her learning more than severe learning difficulties. Does that make sense?

Jimjams Fri 22-Jul-05 14:39:50

oh dear jakB (ms school with no problems). I think as davros said this woman is an extreme case. I guess just answer her questions honestly but as tactfully as you can.

I was worried that the newly dxed mum would be worried by seeing ds1 because of his lack of speech- because she's quite focussed on speech (as I was when ds1 was her ds' age), but she seemed reassured by him- I was frantically talking about children I knew who had done really well in case ds1 scared her!

JakB Fri 22-Jul-05 14:57:53

I know, Jimjams, I find myself stuck between raving about DD's progress (for such a profoundly affected child she has done amazingly but, funnily enough, mums new to autism don't seem to appreciate this!) and then going on about other children who have got spoken language etc to make people feel better! Mind you, it's not just new mothers. DD's grandad is here (I've had a lot of problems with him) and he's asked her supervisor, 'has she any words yet?' FFS. He has no idea about the significance of PECS, won't read anything, thinks she's going to suddenly start talking when she gets to school.

Jimjams Fri 22-Jul-05 15:12:18

MIL was like that for years- then last summer when ds1 was 5 dh snapped and told her/them (FIL as well) that if they didn't make a bit more effort to understand autism we would have to stop seeing them. They did- and now they are sooooooooo much 1000 million times better!

Yes I feel the same- ds1 has made amazing progress- and- a very big one for me- is so happy since starting his new school- he laughs so much now and seeks us out to share things with us. but yep he reamins mute (and now he's developed I think he always will be non-verbal-limited language is part of the problem- but I think he has a bigger problem processing and producing speech iykwim) but I find people new to autism are very fixated on speech "will he speak?" asked slightly urgently. I don't really care anymore - his understanding and communicating is improving all the time- and that makes a far bnigger difference. But "new" people don't get that. I rem,ember not getting it.

RnB Fri 22-Jul-05 16:37:07

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Socci Fri 22-Jul-05 19:01:49

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beccaboo Sat 23-Jul-05 01:24:59

I feel like I'm still a newbie although we've known for at least a year that ds was going to get a dx. And, although I'm a bit to admit it, I can completely understand where this mum is coming from Fio..... I've asked stupid questions - eg. will he be able to get life insurance? - OK, OK, i know it's really idiotic BUT... until you're read quite a bit, and met other parents, it's very difficult to understand what ASD is, what is really meant by the 'spectrum', and to understand where your child might fit within that.

I don't think you should lie to her, or be too overprotective - it's part of the learning process.

Davros Sat 23-Jul-05 11:06:47

I don't think job applications or insurance etc would have occurred to me. I was more interested in would he be able to wipe his own ar*e, I still am

Jimjams Sat 23-Jul-05 11:18:35

ha ha. Do you try and teach that? It's just occurred to me that I haven't and probably should. How do you do it? Hand over hand backward chaining reward type thing? Hmmm that could be my holiday IEP target- he should get it in 6 weeks. They're pretty good at school about teaching toiletting (teaching him to use a urinal for example) but we've never discussed wiping!

Davros Sat 23-Jul-05 11:32:47

I'd love to have a sep room for urinals at home, one for DH and one for DS, though he'd prob try and sit in it for a poo He knows about wiping, he just doesn't always do a good job, ugh!

Davros Sat 23-Jul-05 11:33:09

I mean DS btw, not DH, though sometimes I wonder!

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