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

The video was very menacing but the end made me blub. I suppose because it tapped into my fears and experiences. It reminded me of the HP films - with a simple good fighting an almost undefeatable ignorance and apathy theme. What I do object to is the wording - naming the bad thing 'autism'. It is very shocking. Ds has sev asd and ld, (so I identify with the bleakness for my son) but I still find the title very uncomfortable.

Givemesleep that link made me cry too! It is so true!

Lots of people HATE that Autism Every Day video though - have a look at the neurodiversity websites - whereas I think it gets it just right.

Which I think again just demonstrates the diversity of autism.

Severity is interesting. Have been chatting with ds1's teachers this week (via home school book) about the frustration of having a child who is very able in many ways (and people say things like 'underneath it all' or 'it's all going on in there') but has so many language/speech/attention problems that he is utterly unable to express it - and so gets assessed as having the functioning on a baby/toddler. And in many ways does.

It's a funny thing.

Yes I can see it would not be true or comfortable for all - the everyday video only shows a few children who all appear to have autism at the severe end of the spectrum (like my child so I could identify with it). It was the hoping not to be changing nappies at 6 (a sensitive issue for me) that set me off and the little girl moving her mothers face towards her to get her total attention (as my son still does at nearly 10) that set me off.
I find the variability difficult to explain to others that he is far more able in some areas than others. And also the moment to moment changes so that he could pass for nt one moment and really challenging or frustrated by his own reduced coordination the next. The bad days are not usually ds being difficult or naughty but days he is having a hard time. We just cannot always see cause and effect. We had a difficult week last week. Then his tooth broke. He had to have it out, but he is calmer now. I suspect the tooth was cracked and upsetting him in the days before it broke but although he has speech he could not express what was ailing him.

I get my face grabbed too

I know what you mean. Ds1 came in yesterday and started crying 5 minutes later- was still crying 30 mins later and I had no idea why. It might have been because a neighbour moved something, or pain, or something at school. But I had no idea what it was.

I get annoyed when I get told I'm being unfair on ds1 and not respecting him because I recognise, identify with and liked Autism Every Day. Of course the people saying this have absolutely no comprehension of day to day life for ds1. Because they don't recognise the diversity of the spectrum. I understand and appreciate their POV and wish they would extend the same courtesy to those of us living very different daily lives. (sorry a rant )

And they ALWAYS say the mother says she wanted to jump off a bridge with her dd because she's autistic when she didn't she said she wanted to drive off the bridge rather than send her to THAT SCHOOL. ie it's a comment on the school NOT the daughter. Another rant.

Donotpresstheredbutton, I understand. DS2 is non verbal and slow to develop motor skills, but is a much happier little boy than highly intelligent DS1 has ever been. DS2 might seem to have the more severe actual autism, but DS1, however "high functioning" he might appear to be is functionally and socially crippled by the alphabet soup of co-morbid conditions he has and spends a not insignificant part of his life in a state of torture and misery.

givemesleep, I find it really frustrating that the Aiming High agenda for short breaks is focused on ASD. ASD is getting increasingly high profile, yet there are many many other children out there with similar needs whose parents need a break just as much, who seem to be dropping off the radar because they don't have an ASD diagnosis.

As it has been said on here before, it is ridiculous to focus on diagnosis. Getting help should be about meeting needs, whatever diagnosis the child has.

I agree entirely! It should be need based. Frankly ds ld and sensory issues are as significant as his asd but before his belated asd dx we got no support and struggled even for a statement. Now ds has access (in theory) to a sn holiday club. I am trying for respite too but not getting anywhere yet(he behaved uncharacteristically calmy for the sw), however the asd Dx ( along with my illhealth)at least meant they considered us. He is the same child with the same needs they flatly refused to consider before.
MrsT I can understand the emotions that could drive a desparate parent to jump of a bridge WITH their child to save them from the terrible neglect of the system. No one should need to feel that level of despair or neglect.

Yes agree donkeyderby. I am a bit about the whole focus on ASD as well. For us the barrier to ds1 accessing services is his LD's and challenging behaviours. Or was- we've actually got a reasonable deal for him now after a period of having an excellent SW. But I am aware there are others in our position who won't be accessing the services he is (6 places a day).

Yes agree too magso - I understood exactly what the woman was saying. unfortunately in cyberspace on neurodiversity blogs etc they chose to spin it as she she said she wanted to kill her autistic daughter and not her NT one. They completely twisted what she said. I have a lot of respect for neurodiversity - from their position I understand it, but I lose respect/get cross when a )they twist stuff in that way and b) assume they represent people like my son.

Well, here there has historically been nothing for ASD - only started improving recently. Because of the special schools' specialisms here, physical disabilities and, more recently, LDs have been the main focus, as they've been offering most of the playschemes etc but ASD children with any with 'challenging behaviour', have had access to nothing. The Aiming High agenda will improve that round here.

Agree donkeyderby about the dx thing. We were turned down for assessment initially as the ADOS hadn't yet been done - I argued that his needs were his needs, regardless of dx but of course they just referred me to their criteria. Crap.

TBH I think it's challenging behaviours that shuts the door across the board. If ds1 wasn't a runner/escaper and didn't have CB's we'd have a reasonable choice (whether we accessed via LD's dx or ASD dx).

Dealing with CB's requires properly trained staff in high ratios. Which of course is £££££

givemesleep, that is very true about challenging behaviour shutting doors. It doesn't make a difference whether the DC is ASD or not.

Lack of wheelchair access and lack of staff to support high medical needs also shut doors. And lack of sleep for parents and mental health problems shut doors in different ways
A diagnosis doesn't automatically shut doors.

I hated it! I thought it was both scary and scaremongering as though it is an evil force that will come and steal your babies unless you have a good enough 'mommy'.., does this not hark back to the 'cold mother' theories of yesteryear that did so much damage? I am not a mother of a child who has autism but I work with ASD children everyday and I do not like this at all!

Never seen so many autistic (not asperger syndrome, classic autistic)individuals go so hopping mad over a video before. Autism Speaks UK are apparently distancing themselves from it. Autism Speaks US are firefighting but losing, we hear, and it may be pulled completely as a PR disaster for autism. Hear also that lots of funding is now leaving the 'autism speaks' charities from companies unhappy with this type of very negative portrayal. Also hear that more than one of the parents who lent footage of their child for that video was never told what it was going to be used for, and they too have distanced themselves from this.
Crowd clashes have, we hear, resulted in one autistic lady being threatened with a knife.

Well tbh if they're high functioning enough to be able to communicate an opinion then they're still a different part of the spectrum than many that the video will be most relevant to. But we don't hear their viewpoint very often (except occasionally through people like Tito or Lucy Blackman). Another example of the diversity.

There is room (imo) for neurodiversity and treating autism, but each side has to understand that they are not talking about the other.

If my son could live independently I wouldn't give a stuff how autistic he was. That is not going to happen for him (without a miracle)and if someone dished up a treatment that would give him that then I would take it up. I don't wait for it, I don't think he'd be any better with that treatment, but his future life choices would be made by him not social workers.

It's been interesting spending time with the experts and specialists involved in residential care for those with LFA. Many reports of how there was a huge push for independence and lots of choices for the residents, with much training and encouragement to enable them to access the choices. They couldn't understand why it was having the opposite effect to that expected. The more choices they were offering and the more ways they found to persuade the residents to encounter that wider range of choices, the more stressed and distressed they were getting. They removed all but two of each choice - result, happiness. They were really really happy to have almost no choice at all.

I don't and can't live independently, which as we know I disguise very well. My own self-care skills are frankly cr*p in places and probably always will be, and I can't make a choice from more than a couple of things. But I still find joys in having a version of an autism-designed brain.

Whatever they decide about the future 'fit' of autism versus/including Asperger syndrome, we're probably all agreed that a range of opinions needs to be taken into account, and that very negative portrayals can cause huge distress for a good proportion of those with an ASC, judging from what we're seeing at the moment. A child who cannot understand language when young may still develop that understanding in years to come, and that child would face the message in videos like that that they were destroyers of their family, an embarrassment. Not much of a message of hope and respect for them, bless them.

We pushed hard for good representation from those with LFA in the recent government consultation process, and it was good to see the NAS service consultations taking in a really wide and fairly balanced proportion of people from all parts of the spectrum. People are giving it a lot of thought.

My thoughts and prayers continue that each of our children grow up to the life they wish to live, a life of being valued and respected and included and listened to, a life with the choices they wish to be able to choose from. And for all who do the often thankless task of being a carer, surviving the exhaustion and the paperwork and the battles and the constant 'having to be on watch'. Much to be discovered about how to make that better set of outcomes possible, and much listening and thinking and consulting to be done.

Well part of the problem with choice in residential homes is that choice can clash with the institution's demonstration of good care. Never mind how its presented. Google Charles Antaki and you get a number of papers on this very issue.

I'm not sure I saw the Autism Speaks video as hugely negative. Surely it's just encouraging funders to donate and give money to help tackles problems related to autism. It doesn't work if you say 'autism is a great thing please give us some cash'.

Interesting dilemma on how to represent autism though. I recently started a photographic project about severe autism- and have invited others to join. There were complaints that my photos were not negative enough. An interesting point, although on the website I just put the photos I liked the most really. I said that anyone was welcome to post whatever photos they want on the Flickr group - I did have one of ds1 doing a runner- so not all positive , and yes a combination of the normal/good life side and the bloody awful side might better represent the complexity. Someone will always complain though.

Even more interesting - the Chair of Autism Speaks UK (a separate charity from the US one but linked to it) has issued a very strongly worded statement to worried funders saying that he shares the anger of the autism spectrum communities about this video and the underlying poem, stating it was utterly unacceptable to countless people with autism (his wording) and that he disagreed strongly with the misleading way in which some of it has been put together. I've seen the original.

Hooray for that Chair, I say.