autism speaks, at it again - disgusting

[jasdox]

Have started a new campaign using this video . it is absolutely disgusting that they
can be allowed to put this on tv and can only create more harm than good. Apparently the some autistic hubs are now talking about doing a video to counter act this on.

autism speaks video

Isn't this the bit of prose that upset Amber?

Although I have to say listening to it, although it is rather negative, a lot of it is relevant to severe autism.

Probably just a sign again that the subgroups within autism need to be clearly labelled. They do have very different needs.

It gets quite positive at the end though?? Bit cheesy, but positive.

I can see why it's not that relevant to someone who has Asperger's and lives a full life with autism, but it does strike a chord when your child is 10 years old and despite his very best efforts cannot talk because he is autistic. I don't think his autism is something bad as such, but it certainly frustrates the hell out of him and I think he would welcome anything that would allow him to lead a full life - even with his autism (he loves being busy and going places but his particular 'brand' of autism prevents access to a lot of places).

Luckily i havn't got sound on my PC or i would be even more , i wish i could make a video letting people know what Autism is to me and my family.

Why don't you Marne?

Here's mine:

Sorry can't do a link as one my bracket keys is broken!

I think maybe the video shows the cultural gulf between US and UK as I don't really understand their point. Glittery pointed me to this web site which has a lovely video on it about a club for autistic children in North Lanarkshire. I found it very moving.

www.hopeforautism.org.uk/about.html

Agree with previous post. I am ASD and son is Aspergers. However I know someone in thier 50's (like me) who is severely autistic and their mum might have some sympathy with the views expressed in this video. Not sure my son and I would like a "cure" though.

Yes good point cyber.

Personally I think somewhere between the US "curabee" and UK "culture" stances would be about perfect.

Donna Williams gets the right mix for me.

That's a great video saintly, i havn't got a clue how to make a video, was it easy? what soft wear do i need? i'm not great at that sort of thing but would love to show people what Autism is to us and how happy our girls make us .

I do agree that some separation of the dx is needed as often people/families are unintentionally talking at cross purposes about what autism is for them. I went to a support group last week that illustrated this problem. Some had pre school children with classic autism, others teenagers doing exams in mainstream. All had genuine problems but very different ones.

I used animoto- they do most of the clever bits for you (you add photos!)

Agree cyber and see it again and again.

I have just left the NAS because I believe as a representative organisation it has totally lost sight of the needs of those with severe autism.

Unfortunately it seems most organisations are unable to adequately represent the diversity of autism and very different needs of the different subgroups.

wow saintly that made me cry, my ds is nearly 4 and i just cant imagine him doing so many "normal" things that really made me see i hope he can be like your ds and do all those things, plus i so have to take more photos of him "doing autistic things" i usually take pictures of him when he doesnt come accross as so autistic but i think i need some pictures which show things he is struggling at and maybe then i might make a video like that for my family some of which I am sure dont see my ds's problems or see only the problems and not the lovely little boy i have. thank you for sharing that it really made me think more positively as was having a bad day, senco at school was telling me (after i asked in all fairness!!) that most of the kids at preschool are scared of ds and avoid him and it made me feel so sad about his future, youve really made me see it differently in seeing that video this afternoon, thanks so much xx

Oh meer. and

I have a similar video of the surfing. I'll try and add that later.

I've also started this website as a way of raising awareness about severe autism through photography. It's not meant to be exclusive as such though, just to present images of autism in the group who won't be living independently. People can se their own definition of severe. If you go to get involved there;s a Flickr group and Facebook group. Please feel free to add any photos, and pass on the links to anyone who might be interested. Someone has complained that the photos aren't negative enough (!) - so I have promised to add some smashed windows to the Flickr group .

DS1 is a 'non-responder' as the Americans say, but he does have a good life and with the right support there is no reason for that to change. It did take me a long time to get there though. The pre-school years are hard.

omg my language has gone to pot! I hope the above makes sense, you will need to substitute/guess some words! go should be want for example!

I liked it after the initial 'not that shit again'- I liked the defiant way it was dealt with at the end

There are challenges to dealing with both my boys- for milder ds1 it's the anorexia and aggression, for ds3 the constsant satte of alert when out and wiothdrawal when in- but heck they're ,y boys and if the person who wroote that poem thinks my amrriage will fail from it, or I will wake up crying each day, then they will be sadly disappointed!

I get the sense of stealing- esp. with regresive ds4- but it stole the child he was, the one I have now is pretty damned fine too, if a little tiring and overfond of shop toilets LOL

I'm afraid- as MrsT will know in my previous MN guise- that I am against dx separation: it is not my experience that ds3'smores evere dx is easier to live with. DS3 is happy and content even if his language is sseverelya ffected and he needs a SNU place; ds1 is lonely, starving himself to ill health, waking screaming at night with nightmares and violent. We already have no support from anyone bar the NAS because we fit no SSD criteria, without NAS support as well we would probably have to send ds1 to a residential school which would break my heart. Children such as ds1 on the atypical AS side of things are relatively rare but not disposable in order to achieve aims for the rest.

DS1's needs are reflected in a higher rate of DLA than ds3, but I do feelvery alienated by the autistic community generally- it's as if I have to hide my bruises and tears because ds1 doesn't qualify as disabled in tehir eyes, and my needs are irrelevant.

I know I am lucky that ds3 talks at all- he didn't until over 4 and will never be clear (becuase of an asd related accident that caused scars) even if there was a magic cure for his speech delays, but IMVHO i'd rather have 2 happy ds3's than watch ds1 tear me apart, knock me unconscious and slowly starve himself.

Which I know most people will think I am disgusting for.

regressive ds3

ds4 hasn't regressed. Yet.

BTW thats not a dig at anyone here- just a slightly tearful rant after a weekend of snidey comments at a sn group both attend, sorry

I don't think happiness is related to severity though - it's related to getting needs met. IMO it would be easier to meet all needs if differences are recognised. For example ds1 is happy when he is out and about and active. Until v. recently there was nothing accessible to him in this city because it was all inclusive - it met the needs ot many with autism- but not ds1's - or children like him. And he really was not very happy a lot of the time. But according to our council ASD was covered - because there were services out there for kids with Asperger's/HFA.

Of course elsewhere no doubt the reverse happens and the kids with AS have nothing suitable to access (especially as they get older and start to fall under learning disability to access services).

I don't think it really matters how its done or what its called, but some way or recognising (and respecting) the differences could only help everyone.

Same with this video- I think it does reflect the lives of many on the spectrum, but I can completely understand why it would be offensive to those who are independent and identify with the culture side of autism.

think if there is a split, thew NAS would serve the more severe children and there would be no services for peoplelike me.We don't fall under SSD provision (apprently violent s only a term applied to people with severe LD , and they only accept children who are severe- their criteria is (I shouldnt have this btw, shhhhh )

1. A terminal illness

or 2. one that will have a proven lifelong effect (which is where we fall down- we can't prove ds1 will always need supprt)

and

1. aneed for coanstant support in life skills- Paed and DLA agree ds1 needs this; SSD say he does not under their criteria (??)

The move here is away from AS altogether- a ocntinuous spectrum diagnoses where children are diagnosed as ASD then services are tailored to individual need; supposedly to accomodate children with more variable needs and allow for movement along spectrum without need for new assessments (Somethinga re bing increasingly asked to eprform, at obvious expense). The Paed did also say it was hopefully to force useless SSD's such as ours into looking at the whole child's needs rather than title of DX.

Persoanlly I don't think it matters- there'sso mcuh negativity about ASD's anyway in MS professionals that this si the biggest hurdle. Started my ASD course this week, and was amazed that people with professionaljobs spent the night referring to people with ASd as 'one of those', 'them' and the more general 'I have one in my class'- WTF? Am keeping my parent sattus quiet for the first few weeks as I don't want to seen as somewhat lesser (charity background but no employment atm)- I was warned that can happen- but looking forward to wiing a few grins off when it is needed!

Oh and yes I agree happiness isnt related to severity- I just meant if I could swap his HF status for DS3's ability level but in return get happiness for him ,then I would.

I got the feeling the begining of the video was intended to shock , scare people by portraing the most severe symptoms of it, iykwim?
I suppose by talking about severe autism it gets people attention onto the subject, even if it doesn't quite portrait acurately.

i liked it...
It was a response to that horrible I am autism 'poem' wasn't it?
It was chilling to hear it again at the beginning but i liked the way it 'kicked arse' at the end.
In fact (although it was cheesy) it made me snivel in a good way.

Some responses to the video;

lizditz.typepad.com/i_speak_of_dreams/2009/09/i-am-autism-awareness-video-by-alfonso-cuar%C3%B3n-ran som-reprise.html

That just shows the gap between neurodiversity and autism condition though doesn't it. I think there is a place for both. But unfortunately it is usual for both sides to ignore the existence of the other.

My favourite one is still the autism everyday one that saintlydame introduced me to on here. www.autismspeaks.org/media/d_200603_EveryDay16x9_512k.wmv .It just makes me cry (and I can't pinpoint exactly which bit does it) so I have to be in a good place to watch it.

I think the whole debate it really hard. The whole 'spectrum' needs more equal representation.

I think saintlydame's point about needs vs. dx makes a lot of sense. I also agree with donotpush that 'less 'severe'' children may be harder if they are violent. I just think measuring severity is hard. J is just a particularly odd case maybe? Severe on CARS and ADOS and in some areas, especially self-care, violence, socially etc. but then advanced in others like reading, computers etc. Where does he fit?

I suppose it's not about 'fitting' into a box but about services and society being more able to look at an individual rather than a category. The whole Aiming High For Disabled Children short breaks agenda is very focused towards ASD, particularly those whose are more severe/ behaviourally more severe. Looks hopeful.

Donotpush sorry you're having a crap time.