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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.

sickofsocalledexperts Sun 17-Mar-13 20:55:26

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

bochead Sun 17-Mar-13 20:59:12

I'm not keen on the NAS as I've found them rather out of date on several issues, and I don't feel they bring sufficient challenge to the corrupt caring carrotism so prevalent within the SN industry as a whole

Although DS had horrendous behavioral problems they were never any where near as bad as those of my sibling who has a different neurological condition which is very rare but incredibly disabling. I frequently found myself losing all patience with his previous primary school, as I'd grown up with far, far worse and DS could at least be reasoned with and melt downs are based on logical reasons that are for the most part completely preventable. HF ASD is NOT that uncommon and tbh I'd expect all mainstream staff to have at least some knowledge of what it involves, along with the milder manifestations of ADHD, dyspraxia, dyslexia and several other conditions.

My Godfather & parents had completely different worries and concerns about my sibling and my severely autistic cousin when he was growing up. They began with - who the HELL is going to take this hulking adult to the toilet and check they eat properly when I the parent am no longer here? The fears of potential abuse when out of the parents sight were much greater (though in the event it was my lad who suffered this). Periods and a teen who can't communicate or understand properly deserve a chapter in their own right in terms of how to cope for carers.

The transition from child to adult services is far, far more traumatic. I keep harping on about it but toiletting an adult is no joke, having to physically restrain someone over 6 foot is something else,dressing an adult isn't funny. Carers of adults with lots of care needs ofte end up in very poor health themselves due to the sheer physical demands on their bodies it creates.

After last summer's experiences with adult services for my sibling, I really do not envy any family for whom "supported independent living" is on the horizon, or who needs to find an adolescent/adult residential unit.

DS swore in the hairdressers a couple of months back and I had to endure some silly woman's stupid Daily Fail opinion on the matter. I wanted to say, "actually I am so,so grateful that he CAN finally express his discomfort, that I don't care how he does it OR what you think!". I sometimes feel very guilty on the forum for my winging about my issues, but I am very socially isolated in RL.

It's all made me very, very aware that although I fret non-stop about my only child, really the biggest disability is only fighting the system on his behalf to ensure he gets a crack at a decent independent adult life. To have to fight so,so hard just to ensure that your adult child will be kept safe, warm and fed must be soul destroying. My mother is delighted he ONLY has the problems he has after her experiences raising my sibling and that's something I never forget.

AmberLeaf Sun 17-Mar-13 21:00:09

I think it was directed at me wasn't it Amberleaf?

I thought that was a question, I answered it factually.

Sorry, I should have realised you were being snarky.

MareeyaDolores Sun 17-Mar-13 21:22:30

I think we should zombie this thread. We're here to support each other. How about finding a list of statements we all agree with

ASD parenting is hard, and more so if siblings also have ASD

Co-morbidities multiply the problems, especially marked learning disability and extreme anxiety/ depression. Some dc have both.

Ability to do daily living tasks (eg toilet) makes a big difference

MerryCouthyMows Sun 17-Mar-13 21:30:06

All I can say is that I try my best to get by, I ask for help on here when I feel I need it.

I don't do it with the intent of upsetting anyone else, far from it.

I do it because this is my ONLY support, and I'm close to breaking point.

For everyone that says I must be so strong - I'm NOT. I'm just trying to fight each fire as it comes along, without breaking myself in the process. And I'm not doing so well at that right now either.

I definitely AM more sensitive to stuff like this infighting at the moment - but to me, I don't think that's surprising.

God knows what I'm doing wrong to be finding it so hard with my 'HF' (HF my arse) DC's tbh, because I can't work out how it's 'easy'.

The truth is, there is always someone worse off <Limbo - this is true, although the reason I stopped going to the NAS meetings was because I was there was never anyone worse off than me. We used to call it 'bottoming' grin many years ago on here, where your child is the one that is noticeable NOT doing the stuff everyone else's is. It can be very depressing in the early years when some kids are developing rapidly to be the one who is always being bottomed (and everyone else is using your kid to make themselves feel better about theirs - and I say that with no malice - I think it's a natural thing to do). Anyway if you ever find yourself being the bottomed one in the group it's best to switch groups! Because yes there are always people worse off.

As DS1 has become older I've tended to get involved with either his SLD school or respite centre support groups. Out children have a wide range of disabilities but similar levels of learning disability and functioning so it works well. TBH within our groups now it is the ones with children who can talk in sentences who often have a tough time as SS seem incapable of recognising that 2 hours sleep a night for 13 years is 2 hours sleep a night whether or not there's a sentence being said (which is often echolalia anyway).

Bochead - yep we've started transition now. The really scary thing is that there doesn't actually seem to be anything in existence locally for someone with ds1's level of functioning. Anyway I had rolled up my sleeves, started my SS campaign and am watching really. Quite a few of my friends have slightly older children so they are starting to find out options (although frighteningly they don't seem to be being given many if any).

One thing I need to find out is when I have to start shaving ds1 and how? What do I do without cutting him to ribbons. Or should I try and teach him (he's a bit keen on a razor and more than you want comes off). He's getting a little bum fluff moustache - waiiiiiil.

PipinJo Sun 17-Mar-13 21:41:36

Oh dear so it was directed at me Amber as you posted straight after me confused

When ds had his report by Ind Ed Psych it said the school misinturpruted the High Functioning label as my ds could cope in school as academically was average. He then said however the autism is not is what is high functioning which people misunderstand in the label HFA/HFAS as the autism was still servere. The HF is the skills level to be independant

Level of functioning is not in the diagnostic manual in terms of using toilet/feeding self these are levels of functioning for diagnosising ASD/AS. It is the symptoms of communication and social difficulties, ToM, Sensory etc...

I think their is a mix up here as HF/LF is not the autism.

I know LFASD DC doing A Levels...they are non verbal, stim, no sense of danger, ToM etc

I know HFAS people who will never leave FT support as their ASD is so severe.

PipinJo Sun 17-Mar-13 21:44:15

these are not levels of functioning for diagnosing ASD/AS

MareeyaDolores Sun 17-Mar-13 21:44:41

Electric shaver. Industry standard for paid carers wink

PolterGoose Sun 17-Mar-13 21:48:05

PipinJo I think, if I've read your post as you intend, that is exactly it. The high/low functioning refers only to IQ/intellect, which is not part of the diagnostic criteria for ASD. It is very possible to have very mild ASD traits with low function and equally possible to have very severe ASD traits with high function. Both can be extremely disabling but neither is necessarily harder, just different.

With batteries though? Or fark knows what would happen! (You can get battery operated can't you? I am clueless). I really can see everything being shaved, we already have to lock away our razors.....

MareeyaDolores Sun 17-Mar-13 21:51:21

The ones I was thinking of went back on a charger...
Like an electric toothbrush

MareeyaDolores Sun 17-Mar-13 21:52:17

Eyebrows, hair, armpits...

The dog...

PipinJo Sun 17-Mar-13 21:53:03

PG angry I can't write as good as you! thanks

bochead Sun 17-Mar-13 21:58:16

PipinJo

It would be nice if the NAS could lead the way in raising public awareness of the distinctions you've just made! It would save so many families so much grief when dealing with the myriad of non-clinical staff they have to negotiate in the battle for services.

I've come across individuals with Asbergers who will never be able to live independently, or pass a single exam. Yet the public perception is that this diagnosis merely means a highly intelligent, slightly geeky professional/academic expert. VERY unhelpful for the poor parent fighting SS for a residential place for their adult offspring!

I'd be a bit worried about plugs (because you'd have to use the 2 point wouldn't you? :confused: and water). Will search for a battery I think.

We've already had some newly <ahem> appeared hair shaved off when left unaccompanied in the bath so I am slightly paranoid about where a razor would be used. Yes the poor dog, he'll have to learn to hide. The cats too grin

AmberLeaf Sun 17-Mar-13 22:43:08

Oh dear so it was directed at me Amber as you posted straight after me

Pipinjo

No it wasn't directed at you and no it wasn't posted straight after your post, I did post after your post, but that was something else.

My comment was...

It isn't easy for any of us, we all struggle, some in the same way, some in different ways

SN trumps is never helpful tbh

I also posted in reply to Handywoman that it wasn't directed at her, but that it was a general comment.

I thought that made it clear that I wasn't aiming it at anyone in particular.

I can understand why Handywoman felt I meant her as I was addressing her comment in my post.

There are over 100 posts on this thread, the whole 'some have it easier/harder than others' thing arose, that is why I posted that SN trumps is never helpful.

So again, just in case anyone else feels I have insulted them, it was a general comment based on the discussion on this thread.

sazale Sun 17-Mar-13 23:01:19

ASD is such a complex thing! My dd 14 is classed as high functioning as she has above average iq. However she has no self care skills, no sense of danger, unable to do anything independently, cannot recognise emotions in herself or in others (even their faces), has fantastic speech but is still unable to communicate anything other than "cocktail party" talk, wets herself but refuses to acknowledge it, won't wear sanitary towels and will deny she's bleeding (thank god for tena lady pants) is highly vulnerable, refuses to walk, has massive sensory issues etc etc etc (I'm sure you get the drift). It doesn't help that she has demand avoidance.

She needs 1 to 1 support in special school and gets hrc/Hrm DLA. However no one will give us any support because of her blinking IQ! Where we live if she had learning disabilities there are plenty of fab schools that could meet her needs and a fantastic CAMHS team that would support us. Instead I'm left fighting for support and fighting for the right school (the one she's in is rubbish but the only one that can in theory meet her academic needs).

All our kids with ASD have difficulties that are all uniquely challenging in their own way whether they be low or high functioning.

PipinJo Sun 17-Mar-13 23:44:51

Oh no Amber not insulted just curious grin

Yes Boc NAS made it National Aspergers Society and glammed up AS quite a bit which yes helps with stigma I guess but they think all our kids are Einstein or Gates! Some are not all. Some are and can't live ind ever due to CBs/sensory/anxiety etc

Sazale your dd (sorry) is a perfect example. My solicitor had to inform my LEA in tribunal that it was not about academic level it was about the Autism that is stopping my ds learning in NT teaching. I hear so many times on here 'my dc didnt get a statement because they are bright'. Sadly the IQ is not what SEN Statements are for as then all naturally lazy dc who didn't apply themselves would all have statements. It is for children who can only learn a certain way with certain support and resources due to their learning difficulty which has nothing to do with IQ but their ASD/Dyslexia/ADHD etc.

Each child is very different I hate this sterotyping! Ds ASD was easier to manage when he was severe due to no awareness and detached from everything. He would sit their and stim all day and not a word from him...HT said he would love 30 like ds in nursery <sigh> Now his ASD is worse the more aware he has become as he is noticing and asking why he is different (which is great but still heart breaking)
However DS 'himself' is easier for my to cope with now as 'HF' as has so many skills. It was harder when the skills were not their and classed as LF. Does that make sense! His IQ has remained the same but his level of functioning improved due to being taught. His ASD has improved (development of speech) but his social skills have got worse with self awareness/self esteem(I guess). Sensory hasn't changed at all and anxiety has got worse with awareness.

LimboLil Mon 18-Mar-13 09:53:49

Pinjo, that's really interesting and the impression I got at groups from the parents was that the level of distress was maybe higher for HF children who were very aware of their difficulties and in the case of the girls, seemed to turn it in on themselves whereas my little boy still lives very much in the moment and if he is distressed, everyone else gets to know about it too! Can I just ask toy at what age your son's awareness increased? My little man is 5 and we could talk over his head about things and he would be blissfully unaware, one of the main things picked up by the paed that we were talking about him and he wasn't bothered. Lately though, he seems to be picking up on conversations we are having which is a surprise to us!

signandsmile Mon 18-Mar-13 10:47:57

I've been dithering about posting on here... but i think i wanted to say how much I agree with

It isn't easy for any of us, we all struggle, some in the same way, some in different ways,

I know I have struggled with NT groups and the whole 'oh I wish he she would stop talking for a min' esp when DS had no speech at all, and we weren't sure he ever would...

But personally I don't feel that way with similar type comments from SN mums, I feel that I don't live your life and if this issue is tough for you then I would want to be there for you...

the way issues with our dcs affect us is also down to all the other stuff in our lives, those of us who have our own helath issues, or are carers for other family members for example,

I'm not sure what I am trying to say here... sorry, blush I think I just worried that people would feel unable to post about what they were struggling with, and that made me feel really sad sad

Limbo I assumed my son had no distress from his condition. Then, when he was about 5 or 6 he was trying to make me understand something. I had absolutely no idea what he wanted and said out loud 'oh ds1 it would be so much easier if you could talk'. He started howling and howling and howling. He was absolutely inconsolable. So I realised then he was very aware of his difficulties.

As he's got older he has more alternative ways of communicating and has made it very clear he doesn't like quite a lot about autism. I think it can be dangerous to assume (as most people do, as I certainly did) that mental health issues only apply to those who are higher functioning. I now realise there was a short period when ds1 was probably very depressed. Of course he couldn't express it as such.

FanjoForTheMammaries Mon 18-Mar-13 12:05:42

I would argue strongly that distress is not always worse for HF children.

A girl in my DD's class, who has severe autism, is constantly screaming and beating her head off the floor because of the pain caused to her by noise.

FanjoForTheMammaries Mon 18-Mar-13 12:06:25

All children are different though, my DD is usually contented

PolterGoose Mon 18-Mar-13 14:16:38

I don't think any of us who have HF children have suggested that our children suffer more distress.

However, despite everything, I really do envy you Fanjo having a contented child, for my ds will probably never experience that feeling (and I'm not saying that in a competitive manner, and I am aware your parenting experience is hard, but having and loving a child who never really experiences happiness apart from transient moments, is not nice) sad

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