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

[autumnsmum]

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.

[MerryCouthyMows]

Y'see, I used to get jealous with things like that - now I am at the point where I can celebrate in my friends' DC's reaching a milestone, whilst still feeling sad about the struggle that my own DC are going to have, or have had, to reach that point.

And with some things I have had to accept that my DC's will never do. Which IS hard. Maybe some people never come to terms with that.

I try to live life in such a way that stops me (just about) from falling off the edge of sanity by telling myself that it's no good wishing your DC's could do things that they can't, because while you're doing that, you're not enjoying your DC's for who they are.

I have had to come to an acceptance that my OWN life changed immeasurably when I was dxd with epilepsy, so maybe that has given me a slightly different outlook.

I'm not jealous of everyone that doesn't have seizures - I drew the short straw more than effing once but it's not like that's anyone else's fault.

They might have a disability that THEY find hard to deal with. Everyone has their own struggles.

[MerryCouthyMows]

I think maybe I'm just a bit more sensitive to this than usual. I'm really finding it hard to place DD for post-16 education as she falls between the two things provided locally, she HAS to stay in education till 18 because if not all my benefits for her stop and I'll be meant to feed her on fresh fucking air...

This is MY life, and I am finding it hard.

[autumnsmum]

Merry you have my total empathy and that's what I'm saying we all have dcs with issues and many of us have them as well.That is why I felt so annoyed about only one type of asd being covered at the talkim not saying its easier having high functioning autism as I say my son has it .My dp also has agoraphobia and depression I just really felt there are many types of autism and only was mentioned.

[LimboLil]

Hi I went to a support group recently and it appeared that every other parent had HF children. I was a bit disheartened to start but once they got talking about some of the behaviours and the prob switch getting a diagnosis and accessing support, it sounded equally hellish to my probs. My son isn't severe but I wouldn't call him HF either.

[LimboLil]

Ps actually I have no idea where he sits on the spectrum. He talks quite clearly now, mainly to communicate his needs, though he is starting to point things out in books etc and we have noticed he is getting more tuned into conversations around him. He is toilet trained, but wiping and washing hands a bit hit n miss. He is only just starting to trace letters and though he recognises letters, he doesn't actually read yet but does (finally) enjoy sitting down with a story. He is totally unsociable with peeps he doesn't know. He uses a lot of echolalia, quite loudly sometimes. Still struggles with waiting, taking turns and can be impulsive and run off, but less so lately. He is five, but nearer to six. Does this sound similar to anyone else's DS?m

[MerryCouthyMows]

Not all DC's on the Spectrum will learn to read, but some do. My DD was 8yo before she could read a 3-letter word. My DS2 was reading 3-letter words by the end of Y1. My 25mo DS3 can't even tell me when he needs his nappy changed - he doesn't even cry for it.

They're all different.

[sickofsocalledexperts]

I am not saying anyone with a hf kid hasn't got problems, of course I'm not. I have seen both ends of the spectrum in great detail. My heart goes out to some of the mums of Asperger's boys on here, and friends in RL

But I would say a lot of things in life are easier if an autistic child can talk and has an unimpaired IQ

I would be very surprised if anyone could argue against that?

[MerryCouthyMows]

My DC's that can talk and hold a conversation HAVE got impaired IQ's. just because they can hold a conversation, doesn't mean that their IQ isn't impaired.

My DC whose IQ isn't impaired has a greater social skills deficit than the others. So that brings a whole host of different issues.

They are as hard to cope with as each other, just in different ways.

My DS1 with his IQ of 132+ is the one that is teetering on the edge of being excluded from MS school, with no suitable placement for him if that does happen - to academically able for SN school or PRU, not socially able enough for MS...

Why is that any more or less hard to deal with than a well-behaved DC (like my DS2) that has different issues?

[MerryCouthyMows]

Don't get me wrong, I can totally understand the frustration that the NAS held a talk that was focusing mainly on just one part of the Autistic Spectrum, rather than a talk about how differently each DC with Autism can present - I know this, the evidence in incontrovertibly there before my own eyes, every day with my own DC's.

Doesn't mean that I would get annoyed by that though - they can't cover every part if the Autistic Spectrum in just one discussion, the spectrum is just too diverse for that!

[sickofsocalledexperts]

I think there is a lack of empathy in general from some sections of the autism world for those who have kids who are at the lower functioning end. The stereotypical view of autism is the quirky higher functioning kid who struggles socially.

I am talking about kids with no speech, nada, no signs, no PECS, an IQ that is

[sickofsocalledexperts]

Because that I'd how the thread started Polter

[UnChartered]

but the stereotype is just that, a stereotype

how many times do we all remind people that autism is a spectrum, all our DCs and family members are different

not worse or better, but different

[UnChartered]

i hear you Polter

[sickofsocalledexperts]

I am astounded that your lack of empathy for those with lower functioning kids

It's like being at that NAS seminar in the OP

[UnChartered]

empathy is about understanding, about accepting other people's lives without judgement

if you're talking about sympathy, sick then yes, i have sympathy for anyone who has it 'hard' but like you yourself said earlier, it's not a competition as to who has is hardest. there is no finish line, no standard to reach.

[Strongecoffeeismydrug]

I can't even imagine listening to your own child say they want to die because they know their different :(
DS is oblivious to the fact he's not the same as everyone else.
All kids on the spectrum are bloody hard work and bring their own unique joy and problems wether LOwer functioning or higher functioning.
I love to hear everyone's boasts,brags and amazement when their kids do something special that they couldn't do before :)

[sickofsocalledexperts]

Well I am not sure if this is really getting us anywhere but I would reiterate that life is generally easier if the child is less severely disabled . Come and meet some of the kids I'm talking about, with IQs below 70 and self-inflicted wounds all over their bodies, then let's talk.

I'm not saying there are no problems on the hf side; you are choosing to mishear that because you only want to see one side of this debate.

[MareeyaDolores]

Am going to pitch in again. I think that at any level of ASD the parent's life is severely affected. Challenging behaviours and co-morbid conditions (including low IQ) can add to that. Good support helps a lot, be it education, family, respite, whatever... but sadly is rare.
From the child's point of view there are too many other variables influencing quality of life for severity to be the main issue. And in adult life, I guess it depends how you measure quality of life. And 'living independently' can be subjectively dreadful.

I'm sure that IQ, verbal ability and basic-self care matter hugely in improving the odds of a reasonable outcome. At the same time, there are some very functionally-impaired adults where excellent 24 hour care with high staff ratios means a full, happy life. And some HFA adults for whom suicide, drugs and prison are the basic options.

[MareeyaDolores]

I think sickof is right though, the lower-IQ dc are often put on the cant-do-anything scrapheap at a relatively young age, and it's heartbreaking to see self-harm in small kids.

[Strongecoffeeismydrug]

DS does have an IQ less than 70
He does have self harm wounds on his body
He is bloody hard work
There is little support for him or parents like us
But I've seen parents with kids DX as HF struggle just like me and have the same worries about education,acceptance and what the hell happens when we are no longer around :(
We all have our hands full.

[SallyBear]

I don't have much experience with girls with ASD, only my observations and comparisons to my 2 DS one has Aspergers the other is non-verbal ASD. DS4 is at SS and a girl in his class has ASD. She seems very different to DS4, as she licks her hands constantly and runs around in circles. She is fascinated by DS4 and spends ages putting her face into his bd stroking him. Like him she doesn't speak and is still in nappies.

Then my DD is friends with 2 sisters. The eldest one became a school refuser in yr6 as the school moved from their original building to a brand new state of the art building (loos with auto flush and dryers). By the first half term she stopped going to school. CAMHS were called and said that she had OCD, I said at the time about ASD. She is homeschooled now. Two years on her sister starts yr7 at Secondary School. By the first half term she has also stopped going to school. CAMHS have now come to the conclusion that both girls have HF ASD. Both get into inexplicable rages, one hits her mum, the other self harms. On reflection the signs were all there, but only to someone who could spot them. Certainly not school, and certainly not CAMHS.

I think that there are so many facets to autism. I have no idea what sort of autism DS4 has, as he is also deaf which colours things. I would give anything for him to speak, truly I would but we are working on PECS and his understanding of instruction etc. it's the trying to understand his needs and wants that's so hard. DS1 with his AS is a worry as he is the nicest boy you could meet, but must have MUG tattooed across his forehead as people take advantage of him. Sadly he thinks that he has friends at school, but in reality he has nobody. That makes me sad. It's all a bit shit but we manage.