Where do you see your ASD child in 15-20 years?

[Marne]

A few days ago someone asked me this question (where do you see dd2 in 20 years time?) The person that asked me this has no idea about ASD (just what he has seen and read up about in the past few days), he thinks Dd2 will have no life and that she is severely Autistic (he has obviously never met a severely autistic child), this person hinted that dd2 would be better off dead rather than living into adult hood (basicly this bloke is a knob). Any way, this is where i see dd2 in 20 years time (at the age of 24):

I think dd2 will always need some support, that could be from a friend, from me or a carer, she may have to live in sheltered housing. I think dd2 will be able to look after herself (cook, clean, wash, shop etc..), if she gets the right support through school i have no doubt that she will pass GCSE'S and possibly A levels, Dd2 may struggle to get a job and might spend most of her life out of work. I know life won't be easy for her (is it easy for anyone?) but i believe that dd2 will be happy and will always have family and friends around her.

Dd2 is only 4 (still a baby), she has already proved every one wrong, i have great faith in her and i hope she proves us all wrong in the future.

To have someone tell me that 'dd2 will have no life' really hurt me but it has made me more determined to prove people wrong. I have a strong feeling dd2 will prove us all wrong when she starts MS school in september (i feel she should go to sn school but lets see if she proves me wrong, lets give her a chance).

Who knows where our children will be in 20 years time?

www.guardian.co.uk/society/2010/may/30/louise-stern-deaf-chattering-interview

From what i have read on your threads lou, your dd is very similar to mine, not all ASD children have the brain to achieve A-levels, some ASD children have severe learning difficulties on top of their ASD. Have the doctors ruled out ASD?

I hope all goes well with the EEG, theres nothing worse then sleep deprivation, we had a shit night last night as we ran out of Melatonin, if i had to cope with it every night (like last night) i would be a wreck. I hope you get some answers soon. Just remember you are doing everything you possibly can for dd and you are a great mum. Keep fighting.

Marne, our paed has a 'special interest' in ASD and neurodisability. He feels that dd doesn't have a SCD. Everyone I describe her to says 'sounds ASD'. I think her eye contact & desire to engage (dominate) mask her traits, tbh.

Has your paed said why he thinks that, Lou? Eye contact and social engagement are total red herring with asd, as I'm sure you know.

Dd1 is the world's most social 5 year old - always chatting to people, runs to open the door when the bell rings so she can talk to whoever is there, always wants to share a puzzle or a game. She thrives on social contact. But she is also very clearly asd.

If you think your.dd's eye contact is masking traits, could you get a second opinion?

ASD is inappropriate or abnormal social interaction not absence of interaction. DS1 engages obsessively on his terms - not normal engagement obviously but very much not the aloof type of ASD

lou- i think you need to ask for a second opinion from another pead. ASD is so complicated, the spectrum is so huge (not just AS, HFA, Classic ASD and Severe ASD), my dd2 does not really fit in anywhere on the spectrum, like you dd some of her traits don't fit in with ASD, dd2 has no behaviour problems, she has imagination and she loves being around people, she also has very few sensory problems (just sound). Dd2 still puzzles me, some people see her as severe (people that don't really know her) and others (that know her) see her as high functioning.

I would say parts of dd2 meet the HFA end of the spectrum - the way she has taught herself to read and write, her love for numbers etc.. But her speech and understanding are at the other end of the spectrum. I'm not sure if we will ever get a dx of where she is on the spectrum.

I also believe that girls on the spectrum learn to mask their traits.

Dd1 has Aspergers and dyspraxia traits, she's very sociable and has great eye contact.

Even without a dx you can tackle the traits she has using OT, SALT and ABA. TBH dd2 seemed to get more help before her dx.

I'm still in shock. Three children under five and you're still reasonably sane and coherent?
That's something I'm in awe of.

I spoke to a man recently on the phone, who was 'severely autistic' as a child. He has a 'severely autistic' son who he got into a very expensive residential placement through being utterly obsessed.

He became absolutely single-mindedly obsessive about learning how all the systems worked, with the bonus of not having the level of empathy that often holds parents back from telling it straight.

He now sells his knowledge and expertise for a bomb, and seemingly has no issues at all with telling you directly how much it will cost. It is a scary amount, but he is honest and accurate and doesn't do 'add ons'. He can even help with battles with Social Services.

I never engaged his services, because I couldn't afford them, but I reckon he gets enough people who can. I see my ds in a job where his autism is 'useful' rather than an 'impairment'. That is NOT to say I'll ever forgive anyone with stupid rainman comments though. I just hope to harness any strengths he shows.

I don't feel too sane today. I think my hope is that she'll get to the Special School and they will see her ASD traits & pass them on to the paed, because he does clinics at the school.

Anyway, I've totally hijacked this thread. Sorry once again

Don't be sorry, I'm sure Marne doesn't mind.
I'd just hate the sn boards to be a place with pigeonholes, where if your situation is a bit of a medley, you feel as if you don't belong.
We all have a need to rant in a safe space sometimes, and I think the things we all have in common are far greater than the individual dxs of our children.

You haven't hijacked Lou. I know ASD is banded about, and it is pretty convenient to have a catch-all 'disability' for a variety of problems, but they really are wide-ranging and I expect may children with ASD present as many children without iyswim.

It's unfortunate terminology and it pigeonholes us 'into' a disability as much as it 'excludes' you. It really shouldn't be like that, all it is is a list of strengths and weaknesses that are not typical.

It must be very frustating that your dd is such a puzzle, but our children are just puzzles with a label. Helpful for some of us, a real pita for others.

I don't think you were unreasonable actually to say what you said, but on the other hand I don't think it was quite meant the way that you took it.

DS1, hopefully, if he can calm down a bit, will be academically quite successful. Whether that translates into being employable is open to debate, though.

DS2, I have no idea. At the current rate, probably the despotic ruler of a small nudist colony.

And un-MN hugs to you, Lou. My two have been driving me nuts, today. I've slammed the box of duplo down in the middle of the living-room floor and dragged out my laptop in the hope that my stress levels come down a bit and I feel less inclined to shout at them

Don't worry about the hijack, one of the reasons i started the thread was because i am having a shit week (dd2 refused a place at sn school, problems with housing etc..) and i needed to share with people what a twat my mums boyfriend is. I rely on mumsnet for friends, i have no one else who understands what it is like having a SN child and having to fight everyday to get what our children deserve.

Lou-have you contacted BIBIC? i have contacted them today reg dd2 as i was hoping they could help me pin point where she is on the spectrum (if it is possible).

ouryve- i think i will try the duplo trick , i have been trying to potty train dd2 all day, she did one wee on the potty this morning, just took her to the park, she got home dry, stuck her on the potty, put her pants back on and then she pee's all over me , i think i will give up and get the lego out.

DS2 knows when he's wet and strips off. Fair enough, I can put a fresh nappy on him. It's when that nappy then comes off every 3 minutes that i start to get a bit because he always seems to choose a moment when I'm busy with DS1. This morning I had DS1 messing up the bathroom when he was supposed to be sat on the loo and DS2 stripping off in the livingroom. I wish I could leave him starkers and let him just get the hang of it, but we have carpet and then there's all the shoes, toys etc which are potential targets. At 4, he's a bit old to let him run in the street starkers like people seem to do with their 2 year olds around here, when it's time to potty train. Plus, there's the running away thing which sort of get in the way of that.

I ordered some dungarees from Next, today, so hopefully I'll have them in the morning and be able to plonk them on him (OK, wrestle him into them, trying to avoid flying feet) when he's stripping for the reaction rather than because he's wet.

The Duplo's at least keeping DS1 busy, anyhow. DS2 actually put a few of the Bob the Builder faces onto some wheelbases (whoohoo - first time I've ever seen him put lego together) and played with it for quite a while before returning to his stripping antics but, apart from a break while we too a walk around the block and while he chalked for a bit in the back yard, DS1 has been pretty busy with it.

Dd2's now refusing to wear a nappy (due to me giving her in the night garden pants), i'm trying to keep her away from the new sofa. I can only really potty train her when dh isn't here as he hates dd2 peeing on everything , i really want to get her dry by september but its going to be hard. I'm sure she could do it if she wanted too, she manages to hold on for hours when her nappies off but then when she does go it causes a flood .

We use dungarees when we take her out (to stop her undressing).

if someone had asked me this question 10 years ago I would of thought I honestly don't know ds's[15] speech was terrible, was constantly hitting me and his sisters, didn't eat or sleep and dh had asked me to put him in care as I was totally exhausted. [he has to work] but in the last 4 years its changed yes he will always need support but can cook a little, his self help skills are coming along nicely he still needs telling to get into shower and I need to wash his hair and nag tell him to use shower gel he still only sleeps about 4 hours a night but he doesn't need watching 24/7 any more I can't go out and leave him as he is too unpredictable with knives and fire.There may come a time when he will need to go into supported accomadation but only because we'll be to old to care for him.

Actually, the one thing I would like DS to be able to do in 20 years' time is being able to have a conversation, in whatever form. Just a bit of back-and-forth, you know, chit-chat, even just telling me what sort of day he's had would do. I know we're getting there, but at this rate, it does feel like it will take 20 years...

Actually I think i met ds2 in 20 yrs today, from afar I watched this man with someone (I'm guessing a support worker) in the swimming pool.
He didn't need hand holding all of the time but did need an able adult with him.
DS2 struggles to communicate, his latest report describes him as selectively mute - not sure I agree with that but he does certainly struggle.
He has learning difficulties BUT if we find his niche hopefully he will be able to do some form of work as he has a good level of understanding.
We were also told at a recent crap appnt that he is likely to deteriorate physically with age so I guess manual work is out too.

"despotic ruler of a small nudist colony"

We were at the centre for children with disabilities earlier which is next to this building.

We were considering buying it with a lottery win and DH wondered what the big arched enclave underneath the clock tower with the balcony was for. I thought it would be perfect for DS to appear proclaiming things wearing a dark cloak with long sleeves, organist in the background...

Blimey! I remember Warley from when I was a child, our neighbour was a regular patient, a lovely man but struggled with mental health & was in & out of various hoispitals.

Amazing building isn't it? My Dad (born 1940) is from the East End and it was the "place" people were threatened with in those days It has been converted to poncey apartments now.

Warley is a beautiful little town set deep in a forest. DH and I will have all other buildings flattened except for the Snap Centre when we take charge

ds is 17 he will always need total support throughout his life with us and hopfully his own house with 24 hour care when we are both dead i find it very difficult to think of the future that though time is marching on he leaves school next year and we have to start thinking of where to next the thing is noobody will ever LOVE him after us they will look after him but they wont love him sorry cying now

Oh vintage, cry all you like, it's so hard thinking that. Do you have no family other tah yourselves?