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Felt let down by nas seminar on women and girls with autism

(177 Posts)
autumnsmum Sun 17-Mar-13 09:27:46

Happy st Patrick's day everyone Just a little moan yesterday I went to the nas south east members seminar on asd in women and girls . I left feeling totally excluded no one had a dd like mine . Everyone had dds who were very high functioning , I have a dd who is being statemented and may go to ss or a least a unit . I realise it wasn't the organisers fault but I left feeling more depressed than when I went in . Thank god for mnsn which is the only place I have met people in a similar position to myself.

colditz Sun 17-Mar-13 10:50:41

It's a different kettle of fish. I do moan about ds1 talking continually, but what people don't get is that it isn't a continual wish for my attention, or continual interaction, it's continual noise. They things that he talks about are not relevant and if I try to respond, or divert, or even join in, I may as well have not spoken. I actually can empathise with the woman who was in tears about the trapezium talk, because it distracts people, especially teachers, from how seriously your child is disabled. I remember crying because ds1 was talking about friction and yet still hadn't ever said mummy, but I didn't have the vocabulary to explain to the doctor that ds1 wasn't COMMUNICATING.

I worry for his mental health. He is high functioning and the ed psych says there is no way he's going to get a ss placement, but actually he needs one because he's so goddamned vulnerable. He's nearly ten, in a years time I am expected to allow him to walk three miles to school unaccompanied because "he's high functioning" but he can't even be trusted downstairs on his own in the morning, I have aSAFE with a COMBINATN LOCK because he picks locks and sees no reason not to do so. I cannot let him walk to school alone. He'd get lost or run over, like a four year old would.

sickofsocalledexperts Sun 17-Mar-13 10:53:29

That is very hard Colditz, So I suppose you are saying your DS talks but doesn't have "functional" speech?

FanjoForTheMammaries Sun 17-Mar-13 10:54:46

Yes, I agree, it is just different situation with different challenges (although a lot of them sound the same as we face).

It doesn't bother me to read about kids with SN talking a lot. The threads I find a bit challenging are those about NT children who are talkative.

But I don't say anything because that is my own issue.

School provision is where we seem 'lucky ' at the moment because DD is so severe she got a place in a great SS with small classes and 1:1 etc.

But the fact she needs it means we aren't lucky really in the long term.

It's all a bit shit really for everyone I think.

autumnsmum Sun 17-Mar-13 11:18:10

My point is I suppose that I feel that huge assumptions were being made about women and girls on the spectrum . I don't want to argue about who has it hardest it's just we don't all have dds who are diagnosed later in life and who love twilight and dr who .just as all boys on the spectrum are not the same

colditz Sun 17-Mar-13 11:23:48

It's really hard to define functional speech, it's more accurate to say he doesn't have functional communication skills. He can make his opinion and feelings known, but cannot follow an instruction to fetch something based on a description. His vocabulary is huge, and the big long words are used in the right context of what he is saying, but what he is saying isn't in the right context for the situation. But the vocabulary blinds people to this. His teacher will come and say "he was telling me all about Venn diagrams today" and yes, awesome, but was he SUPPOSED to be putting his pe kit on? Or drawing a picture of the Spanish Armada?

I am not worried that he won't achieve, I don't really care. I am worried that he will break the law and not be understood, and get tazered and refuse to ever leave the house again, that he will take drugs because he is emotionally six years old and someone tells him to, that he will be used as a henchman by someone a lot more streetwise than him (everyone), that he will be bullied, that he won't be able to tell me any of this because he's too busy talking about getting to level forty nine on an unspecified game.

PolterGoose Sun 17-Mar-13 13:09:47

colditz you could be almost be describing my ds sad

It can be hard sometimes to unpick the autistic behaviours from others, and so often autism is accompanied by one or more bonus disabilities, it is the interaction and complexity of these combinations that makes it all so hard. I suspect that without the sensory difficulties ds's Aspergers would be reasonably manageable, but his extreme sensory defensiveness leads to violence, which is hard to manage.

I do get sick of people, especially teachers, assuming that because he can speak so well that it means he can understand and express himself. He can't. He still needs to be told to toilet, to drink, to eat. He can explain all about the creatures and plants of various historical epochs, he can tell me many interesting facts about life cycles and mating behaviours, he cannot tell me he is sad or tired or jealous or worried. He is just angry.

PolterGoose Sun 17-Mar-13 13:14:40

Posted too early there.

I had always equated him having Aspergers as being mild autism, I don't believe that any more. I don't think it is that simple. It hit home recently when I spent some time with a child (not ASD) who communicated entirely without words, she could assert her needs completely non-verbally, it was astonishing to watch such a pure form of non-verbal communication and realise how very much my ds is lacking.

Strongecoffeeismydrug Sun 17-Mar-13 13:21:55

Ds is LF and I don't go to support groups as I come away feeling more down than before I went because other people's children are higher functioning than him , however the other Parents get lots of support from each other so it's a good thing.
Just wish their was something available for parents of LF kids as we all need support our kids just have different issues sad

sickofsocalledexperts Sun 17-Mar-13 13:43:41

I do hear what you are saying Colditz and polter. - that being able to talk isn't the whole story by any means. Fwiw my hf step daughter has improved in almost all areas now the teen years are almost behind us. But high functioning sounds very different in her case

MerryCouthyMows Sun 17-Mar-13 14:17:02

My DC's may be higher functioning than quite a few on the Spectrum, I've hit friends that have totally non-verbal DC that are definitely Faroese severe than my DC's.

It doesn't mean that my DC's don't struggle every second of every day, just in different ways.

I have doubts that 3/4 of my DC's will ever live independently, and the fourth will only manage it in a very controlled environment, despite his intellect.

I would never be dismissive of anyone else's struggles - just because they are different struggles to mine, it never means that their struggles are somehow less or more than mine.

Having a DC (or more than one DC) with LD's / Autism / Medical needs / physical disabilities isn't a 'competition' where you grade someone according to their disabilities - and I say this as an adult classed as severely disabled.

What one person would find as a best case scenario might be another person's worst case scenario. That doesn't mean that either of them are struggling with their situation any less or more.

Yes, I may post on here when my DC's achieve things - if I can't share on here that my DD learnt to tie her shoelaces when she was 12.7yo, and how proud I was of her for persevering for 9 years of daily attempts, then where the hell CAN I share my proud moments?!

Please don't turn SN into some sort of competition. No, my DD and my DS2 are unlikely to ever live independently, but they can walk and talk (disordered, but speaking). That doesn't mean that it hasn't been as much work and as much of a struggle for me to get them to that point as it has been for someone whose DC will never walk or talk to get through each day and celebrate THEIR achievements.
This thread makes me very sad tbh.

MerryCouthyMows Sun 17-Mar-13 14:21:58

shock I haven't HIT friends!! I've GOT friends ... That was the most awful autocorrect ever!!

PolterGoose Sun 17-Mar-13 14:27:08

It was funny though grin

What was the Faroese bit meant to be? confused

ouryve Sun 17-Mar-13 14:28:00

If it's any consolation, DS1 is highly verbal but is as inclined to eat books as read them grin

ouryve Sun 17-Mar-13 14:33:16

sickof I have one who can speak and one who is only just developing any useful language at all, at almost 7.

It's unfortunate that DS1's special interest often tends to be how DS2 doesn't deserve to exist. Feel free to envy that.

emmetbrown Sun 17-Mar-13 14:35:17

autumsmum I have spoken to other people who have been to NAS talks & felt the same way as you. It's def important to give them constructive feedback on this & then hopefully they can improve their service.

FanjoForTheMammaries Sun 17-Mar-13 14:35:39

Hope my contribution didn't make you sad today couthy, I wasn't so clear I what I was saying but was trying to say same as you..everyone has it hard in different ways.

FanjoForTheMammaries Sun 17-Mar-13 14:39:04

The threads I said made me feel bad are those with NT kids moaning..but I also admit that is my own issues speaking

ouryve Sun 17-Mar-13 14:39:27

And that feel free comment was just a general one, sickof - not necessarily aimed at you.

Parenting DS2 is a breeze compared with DS1, though.

EllenJaneisstillnotmyname Sun 17-Mar-13 14:43:44

Ouryve, I was thinking much the same! grin

I do think that borderline can be the most stressful place to be, sometimes. Not quite severe enough to get good support, but not managing without it. Not quite HF enough to be able to be independent but being expected to be so. Wanting friends but not knowing how to get them.

My DS is HF, but I feel lucky that he doesn't feel the need to have any friends at all, so the fact that he doesn't have any only breaks my heart, not his. Hopefully he is much less likely to be one of the many DC with AS who go on to commit suicide or try to because he is severe enough to completely live in the moment, never worrying about the past or future. But he has an average IQ. confused

I feel very, very lucky that he's not particularly violent, a bit sad that he's not reliably toilet trained but can't wear a nappy in a MS secondary school, but that's just the way it is.

It shouldn't be about who has the worse time. Problems are different, certainly, and some do have a much harder time than others, but can't we all just support each other?

MerryCouthyMows Sun 17-Mar-13 14:45:43

Faroese = far more. I can't type today - or proofread, obviously. Had a couple of szs last night..,

MerryCouthyMows Sun 17-Mar-13 14:53:16

There were a few messages on this thread that made me sad.

If MNSN starts classifying my HF (sort of...) DC's as not severe enough to moan about, and celebrate their little successes on here, I'll have nowhere TO do that.

I can't even access the support groups as the closest one involves a bus journey of over an hour with 4 DC's on the Spectrum (just NOT possible alone), and the only other in my town is one where you can't take your DC's with Autism.

Which counts me out because I've yet to find ANYONE that will look after 4 DC's on the Spectrum, AND be able to deal with their physical disabilities AND their medical needs.

So I just feel that by people saying that I shouldn't talk about the things my DC's say or do on MNSN, it's taking away the one firm of support I DO have, simply because each of my DC's individually are higher functioning than theirs.

It makes me feel like I shouldn't ever complain about his hard I'm finding it, because as far as they're concerned, my DC's can walk and talk (of a sort), are in MS (when they shouldn't be, and DS3 is unlikely to ever be without FT 1-2-1), so it's as if some posters are saying "what is she moaning about"

sad sad sad

FanjoForTheMammaries Sun 17-Mar-13 14:55:48

You are having a damn hard time and should feel free to moan.

I have a mere 1 kid so maybe I shouldn't complain smile it could get ridiculous

FanjoForTheMammaries Sun 17-Mar-13 14:58:19

I have no issue with anyone with kids with any level of SN moaning. If people find it hard its hard and they need support.

I occasionally find it hard when people with NT kids moan about their kids doing things my DD can't do but I admit that's partly because I am jealous.

autumnsmum Sun 17-Mar-13 15:01:58

I know everyone has a difficult time and I have two dcs on the spectrum .Emmetbrown I found what you said very interesting.i felt that the talk was only aimed at one type of asd and there are many types ,as I said previously I have higher and lower functioning dcs myself.

ouryve Sun 17-Mar-13 15:02:45

Fanjo - I do sometimes hear parents of NT kids complaining about all the nasty bitchy social stuff their kids have to deal with and feel quite grateful to be free of all that! There have to be some plus points of having kids who prefer their own company!

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