Wednesday, 29 October 2008

Autism Speaks are here in the UK

Bob Wright from Autism speaks US has landed in the UK. For those living here you may have seen them on BBC breakfast time in The Telegraph and The Times.
Autism Speaks attended the inaugural Annual TreeHouse Lecture, entitled “Are we Ambitious Enough about Autism?” and have already met with some of our MPs. Action for Autism has also blogged about their arrival.

So my UK blogger friends - what are your first impressions?
And my US readers - we would love to hear your thoughts!
So - Does Autism Speaks speak for you?
And i am very happy to report that C's home have much improved. Thank you for your support and some excellent suggestions. :)

57 comments:

Ken said...

So glad to hear from you again, And glad to hearC's home is getting up to standers.

Any thing that helps get the word out is a good thing.

BenefitScroungingScum said...

Whilst publicity is great, it all seems a bit 'lets find a cure for these poor, poor people' to me. So glad C's home is improving though! BG x

alan said...

May the attention finally mean that every person that needs care find it; may it also mean that enough resources are allocated not only for care but answers!

alan

Hilary said...

I have mixed feelings about it I guess. It seems kind of like... condescending to the autistic population? Or... I don't know... Curebie I guess. Something about it rubs me the wrong way. But I can also recognize that it does good, helpful things, so... Yeah. Mixed feelings.

Alin Steglinski said...

eugh *pukes*

Mrs. C said...

Casdok, one thing I have learned is that professional people who seem to want to "cure" autism are never really interested in the people themselves. And no, I don't include parents who have just been smacked with a diagnosis who don't know which end is up yet.

I have to admit that I thought autism was just like any other condition and the PERSON is separate from the condition. You know, YOU could be separate from your diabetes, but your diabetes should affect how YOU live, is how I thought.

Now...

The more I see professionals who want to cure or "prevent" autism, the more they sicken me.

BY ALL MEANS, please give my Woodjie therapy for speech and living helps. But talking about curing or doctoring up kids like my Woodjie pumpkin, I find past a certain point to be ABUSIVE because of the extreme measures of the "treatments" proposed. I wish I were more eloquent to speak on this point because there's just a line there that should never be crossed.

I had also misunderstood "autism acceptance" to mean never giving a child speech or other help that reasonable parents, in their good judgment, feel would be helpful. I thought it meant that if the child doesn't speak yet you should never TRY to do some therapies and help him do so. I think maybe there needs to be more talking about what this or that term might mean to someone new to the jargon. Because ya know, I live with a lot of autism here and even I got confused. My genuine apologies for every time I have spoken the wrong "code" word the wrong way. Hopefully, I communicate more effectively now.

I, for one, see autism as being on the "spectrum" of introversion, maybe a bit of language disorder thrown in. Perhaps I am wrong in that understanding as well...?

But I also get upset to hear news stories of people "in their own world" and I think inclusion at least sometimes ought to be a goal just because autistic people are HUMAN and deserve to be part of the community. They're part of our world whether or not they communicate! GOOD GRIEF! I hate hearing autistic people being described as being in their own world like they're Martians or something.

Although my 8-year-old autistic boy really DOES think he's an elf. He works at the Keebler factory when we go to sleep (probably during your daytime).

OK, rambling.

Hugs to you and C!

Ed said...

Did they get out again? O.K. send them home.

They are so muck trouble to keep up with. It's even worse when they constantly misbehave.

laurentius rex said...

They have actually been here for quite a while, and are effectively bankrolled in the UK by Dame Steve Shirley.

The only reason they have got high profile of late is because Treehouse mistakenly invited the Wrights over here not knowing just how disliked they actually are. They tried to make the best of a bad job. (see Dinah Murray's post on Mike Stanton's recent hub blog.

It is just that you cannot contain the press machine that the Wrights bring with them, but relatively speaking it is a flash in the pan, the hold no real influence over MP's who were happy to press the flesh probably have no idea who they are anyway and just thought it was a grand publicity opportunity.

In fact what they have said is making them as much the pariah amongst established autism societies, as they are in our own community.

laughingwolf said...

great news, cas... may improvements continue on all levels....

StatMom said...

Let's cure Autism Speaks!

For an agency that claims that autism has a voice, they sure aren't listening to any of us.

As to their arrival in the UK, all I can do is extend my condolences.

Halo said...

Good to hear of the improvements at C's home.

Thank you for the posting about Autism Speaks, I know nothing about them and Im interested to hear what everyone is saying.

Traceytreasure said...

If someone is diagnosed every 20 minutes, we need more awareness. I have learned so much from you, Casdok. I'm confused after reading the other comments. I'll keep checking in with you and learning more.... Thank you for the awareness. You've opened my eyes about Autism.
I'm so glad that C's home is improving. That makes me happy!

Hugs for you both!

Marla said...

Woah. A can of worms opened with this one. I don't like the puzzle piece image and I don't like people speaking for Autistics when there are plenty of Autistics willing to share and educate and they turn that down.

I am so glad C's home situation is better. What a relief. You are a kicking advocate and a wonderful mom so I knew something had to improve.

bobbie said...

Sounds as if they are having a mixed reception. I do not enough to judge.

I am so very happy to hear that C's situation is improved!

J said...

I, like some of the other commenters, have mixed feelings about Autism Speaks. Their messages about autism do seem negative a lot of the time, but they also offer grants for small groups like mine who just want to raise awareness in their own communities. They are definitely a controversial group though. No question about that!

Was happy to hear that you are happier with C's home. : )

Flea said...

Oh I'm SO glad to hear conditions have improved for C!

Angela said...

Glad to hear C is doing better!

As to Autism Speaks... I have a huge problem with a group that doesn't actually want people to 'speak' and be heard.

I agree with everyone who says the information must be put out there, but I think that as of yet we have a ways to go.

I know you understand what I mean and I hope I do not offend any of the other commenters...I say it with much love for the Autism community.

DJ Kirkby said...

Very pleased to hear the good news about C's home, what a relief that must be for you both. I like your FBL logo, I would like the Einstien one but can't figure out how to get it saved as a photo or find the HTML to load it onto my blog. How did you do it?

virtual voyage said...

Will check this out, as I've not picked up on it elsewhere. Pleased to hear that C's situation is getting brighter. Was over your way in the snow yesterday.

Jen said...

I'm glad that the situation at C's home is getting better- I hope that it continues to improve for a long time to come.

I'm not a fan of Autism Speaks at all, so I find it a bit depressing when they are taken as spokespeople for autistic families. They're going to have to go a very long way in my mind to make up for the Autism Every Day video.

Domestic Goddess said...

I'm sorry they are there in UK. I personally don't want them here in the US. Since they took over Cure Autism Now they've turned it into a "poor me. Look at the poor Autie" company with corporate aspirations. They want people to feel sorry for autistics. They are also shoving it down our throats and folks are getting sick of it, I can tell you. I've read many comments on many news web sites about how they just don't want to hear any more about autism!
I'm not looking for pity. I'm looking for respect.

Also? I'm glad I found your site. Your C sounds so much like my Bugaboo, except he's six. I've read through your site and I'm so encouraged by what you've written! Thanks for visiting me!

Kit Courteney said...

I am completely ignorant about most things associated with autism as, to my knowledge, I have never known anyone who is autistic, but I find I am learning a great deal by reading your blog.

I wish I could say something useful about this Autism Speaks thing - but once again, I'm ignorant.

I hope to continue to learn.

blogthatmama said...

Wow, nothing is ever straightforward, is it? Interesting subject though blogthatmamax

Mima said...

Casdok so pleased to hear that things are improving for C, that has got to be such a relief for you.

For me I have learnt so much about autism through reading your blog, and haven't come across autism speaks - from reading all the comments it sounds as if they are very controversial - and that I am quite glad that I haven't seen them spreading their message as a lot of other people who like me knew very little would hear the wrong message, and I fully understand from reading all the comments why people feel that it is wrong. I'm sure that if I was in your shoes I would feel the same way.

Anyway fingers crossed for C that things stay improved.

Tanya @ Teenautism said...

It's interesting to read the reactions to Autism Speaks in these comments. I like the idea of awareness through their walks for autism, but it sounds like overall they might be doing more harm than good. They need to increase awareness, not pity.

That's certainly great news about C's home! So glad things have improved.

Paulene Angela said...

Firstly, excellent news regarding your son's home.

I have read on other blogs and sites quite negative articles regarding this couple. They seem to lack diplomacy and just plow in like bulls to a red towel.

Having said that at least they are out there fighting and spreading awareness.

Other associations should think smart and jump in, while the topic is hot.

Dave Coulter said...

Good to hear good news about C's situation! :)

Ettina said...

"Whilst publicity is great, it all seems a bit 'lets find a cure for these poor, poor people' to me."

Is publicity great?
I think it's worse for people to hear things like what Autism Speaks is saying than to hear nothing at all about autism.

WesterWitch/Headmistress said...

So pleased that things have improved for C.

Anything that is high profile will get both good and bad press - I don't know enough to comment though.

buffalodick said...

Dear lady, you have taught me more about this subject than any book or movie ever could. I have never experienced what you have, but you conveyed it very well. I cannot have an opinion because of this, but I will always support yours- because of what you have seen, and lived. Best wishes for success in everything you do- The Buff

Frances said...

First of all, best wishes to you and to C!

The Wrights are very, very powerful media folks over here, and I do hope that their family connection to autism may lead them to doing some good.

However, I do wish that they could hear your words. Is there any way to make this happen? You are so wise and eloquent, and I am sure the the Wrights are not unreceptive to wise words. Hope not, anyway.

xo

Michelle (The Beartwinsmom) said...

I HATE Autism Speaks with a passion beyond words. Sorry... I know this is a "hate free" blog, but I really do hate Autism Speaks. They have done some awful things. I will have to send you some of the American articles.

I'm happy to hear about C's progress!! That is fantastic news!

menopausaloldbag (MOB) said...

I haven't seen it so cannot comment anything of use here. Just wanted to say well done with geting improved conditions for C! What a reliefe eh? X

Kelley said...

Wonderful to hear that things are improving babe.

You know I am always here for you to offload on.

<3

Angela said...

Glad things are getting better for C.

Suburbia said...

So glad things have improved :)

Hammie said...

I was so upset reading about your experience with C's new home that I couldn't comment. I am really glad to hear you are happier. Us mid-term (9 and 11 year old) autie mums hope that one day all the torment of trying to get the right school placement will end and life will be sweet. But of course being a parent, any kind of parent means the worry never stops.
I wish you and C love and I hope things can only get better.
xx

JoyMama said...

Hugs and cheers for C's improved situation! What a relief to hear.

Autism Speaks -- I so wish their outlook were such that their name reflected it accurately... the good work they do (and there is quite a bit) gets sadly undercut by the exclusion and the "cure" orientation.

NEO-CONDUIT said...

Thank-you for your lovely message. lol yes my Dads shirt, must have been the high fashion in the 70s. I'm so glad that the condition in C's home has improved! What a releif for you both.
Kind regards Kirst

LceeL said...

I am so glad you have good news about C's home. That's excellent. On another note, I vote for you as "Queen of the Internet" - because that England job is taken already.

Debs said...

I'm so pleased to hear that C's home have improved so much. What a relief for you.x

Cheri said...

I'm happy to hear that things with C are starting to settle into place. It sounds like the home is just as caring as you'd hoped, and that they want to do what is best for C, they just need to learn how to do it. You did your homework, you are training the staff, and that makes C one of the luckiest guys in the world.

As for autism speaks:

I don't agree with autism speaks or their methods. They frame the statistics in such a way that alarms people. 1 in 150 is still less than 1% of the population, a number that is low for many disabilitis. But 1 in 150 and every 20 minutes terrifies people into doing things that can have devastating effects on society.

Then they frame autism as a disability that is worse than death. Their autism everyday video even suggests that all autistic children would be better off dead! How does society in general accept autistic people when these very vocal parents don't?

And, as has been noted, autistic adults are not allowed to contribute to the organization which claims it is the voice of autism.

Autism didn't start 20 years ago. The human population consistst of less that 1% of autistic adults, but there are autistic adults. Adults who function in society, but need some support.

If autism speaks advertized autistics as being valuable human beings who are entitled to the same dignity most people take for granted, I'd think about joining them. If they spent the membership money on ways to help autistic people navigate through a neurotypical world in a productive way, I'd think about joining. If they didn't spend so much time supporting pseudo-science and harmful treatments, I'd think about joining. If their main goal was to create a world in which autistics were accepted and valued, I'd join. They do none of these things, however, and all I can do is counsel people to think critically about their message.

We all need to ask: Who does autism speaks speak for?

Akelamalu said...

I'm so pleased to hear that C's home has improved :)

Merelyme said...

just stopping by to say hello and i am glad your C is doing well in his home.

Trish @ Another Piece of the Puzzle said...

So, so glad to hear that things are going better for C!

We recently had legislation passed in Pennsylvania to make private insurance cover autism-related therapy, and Autism Speaks legal advocates got involved and almost screwed everything up. So there are many people around here who do not like them on that basis.

I also do not appreciate the way they have treated Katie Wright, who has tried to make it clear that she is not part of Autism Speaks but has been attacked by them nonetheless when she shares her personal opinions on various topics.

I don't like all the divisiveness and continue to hope that the various groups would at least keep talking with an open mind about their different opinions. I am by no means an expert and don't try to contend that what I think now about autism is what I will think 5 years from now.

Honeysuckle said...

I'm so glad to hear that C's home has pulled its collectiove socks up. They maybe just needed educating? Long may the improvement continue.

rainbowmummy said...

Hmmm. When I first heard of autism speaks, which due to lack of a computer was only a few months back I went on the web site, I saw that they were in the uk. Then I read a few things about them from the NAS. I HATE THEM. They will have fuck all to do with my son. If Eggs granparents even mentioned the word cure to me I would tell them where to go. If they set up a charity that aims to PREVENT (read IMO ABORT) autism I would make sure they were never near my son.
What do I think to them being in the UK? Simple answer? Ugh. Hmm I need to chrck out some more of the links you put up.
Ugh, I wish someone famous(as lets face it that is who ppl listen to) would send out a positive message. Gah'.

On a more positive note I am so thrilled that C's home has improved! Hooray! :0)

Shrinky said...

from the little I've seen, I'm pretty underwhelmed.. however, I guess any publicity is good if it focuses the light on providing any RESOURCES, instead of just the usual lipservices for our kids. We can but live in hope.

CAMILLA said...

Wonderful news to know that 'C''s home has improved, a great relief for you Casdok, and for your darling son too.

xx

lime said...

so glad to hear conditions at c's home have improved.

Billy said...

Glad to hear that C's home is improved!!!!!!!!

The Dotterel said...

Great to hear the 'C' update! And anything moving this up the political and media agenda is good news, surely.

vivavavoom said...

I just LOVE that pic of C below!! I have been meaning to email you a question for the longest time. after the election coverage is over (obama won..yay!!!) I will. hope all is well with you both!

LAA and Family said...

The first impression I had of Autism Speaks was through their film "Autism Every Day." (It's on You Tube)They won't get a second chance from me! Honestly, those Mommies whining and complaining right in front of their children was just sickening. No, things aren't always easy, but to have the hopeless attitude that they do? And I wonder, what has "Autism Speaks" actually done for them?

earthlingorgeous said...

Glad to hear about C's home improved. Autism doesn't speak here in my country yet but there are parents and care givers, teachers and therapist helping those who know where to go.

Earth

Elissa said...

Really glad to hear things are starting to improve at C's home xx
It will be interesting to see how things go with Autism Speaks??

Elizabeth Channel said...

I, too, am happy to hear C is doing well, and that your stress, for the moment, is slightly relieved.

I have lots of thoughts about Autism Speaks...but the main one centers around why is Autism first? Why not the person?

Doesn't this break all the rules regarding how we talk about anyone with any sort of disability, ie child with a learning disability vs. the horrific "learning-disabled child."

Put the person first.