Autistic Children Video

[Guest hallyscomet]

http://autism-recoveredchildren.org/

 

 

 

2 videos worth watching,

 

H.

Edited February 22, 2006 by hallyscomet

[mossgrove]

I think Autism is treatable in the sense that there are helpful interventions that can make life for people with Autism easier.

 

The whole concept of 'Formerly Autistic' people who have been 'cured' and are now fully paid-up members of society gives me the chills I'm afraid. I don't like it at all.

 

Simon

 

 

Autism is Treatable.

 

http://autism-recoveredchildren.org/

2 videos worth watching,

 

H.

[DaisyFulkirk]

If I wasn't autistic I wouldn't be me. If you took my autism away you wouldn't get a not-autistic person, you'd get a non-person. It is in every aspect of my life, the good things and the bad things, and all of my friendships, a lot of which are with people 'different' from who you would think a 20 year old woman would be friends with and I think my life is all the better for having friends who are in their 30s and 40s and 50s and 60s.

 

People call me clever and talented and caring and affectionate and, yes, autistic and obsessive and sometimes quite anti-social and all of those things are part of who I am.

 

I am doing a degree at a really good university and I passed my driving test first time and I got four A stars in my GCSEs and my grade 8 in music when I was 15. I don't know if I would have done any of those things if I wasn't autistic, they're better than what either of my not-autistic younger sisters have done so far even though they're more independant and more confident in new places and have much more 'normal' friends and boyfriends and things like that. Are they 'better' than me just because they're not autistic and I am? Thats what frightens me about all this 'treatment' stuff, which I think is not currently a real possibility anyway, I don't think you can honestly make someone un-autistic.

[~Jonathan~]

Daisy Fulkirk is 20 years old.

Daisy Fulkirk is autistic.

Daisy Fulkirk is doing a degree in Higher Education.

Daisy Fulkirk lives independantly with Personal Assistant support.

Daisy Fulkirk is a nom de web.

 

Can I add another one?

 

DaisyFulkirk is amazing

[Jill]

Daisy

 

Reading posts like yours fill me with happiness. They give me hope for my Boy, for what he can achieve that he may not have done if he wasn't autistic. Your post gives autism a positive feeling, rather than focussing on negatives (which sadly as humans we tend to do).

 

Would I attempt to "cure" him? I don't think so. If I did I wouldn't know who he was, he wouldn't be my son any more.

 

Thanks Daisy. That was a really hopeful, lovely post.

[asereht]

Lovely post Daisy!

[DaisyFulkirk]

Thanks Jonathan, Jill, asereht, I was only saying what I think and how I understand myself.

 

Jill your signature really made me laugh... friction burns!

 

I go on holiday every year with two much more disabled friends and their mums, one of them 'Emma' (not her real name either cos I don't have her permission to talk about her) has really really severe autism and learning disabilities and she is always reminding me that even though we are as different as two autistic girls can be we are also the same because what we both need most of all is just for people to accept that we are perfectly good human beings in our own right and do not need to change to suit how someone else thinks we should be.

[~Jonathan~]

Wow Daisy so true. Sometimes I think about how society treats those who are 'different' and attempts to make us fit into what is 'normal' so we can be like everyone else. But the world would be a boring place if everyone was normal wouldn't it? That doesn't mean to say that those who are different are somehow better, I believe that all lifeforms are of equal validity but looking at the creative arts, how much of it would there be if the whole world was what is defined as normal?

Edited February 21, 2006 by ~Jonathan~

[justamom]

thanks halleyscomet, you know its amazing what nutrition can do. My son was dx with Inflammatory Bowel Diease at the age of 7 and was seen my a Gasterenterologist at G.O.S.H, i did try the gluten free diet for a few months and he told me not to bother because it does not make any difference.

 

I can see from this forum and from the videos that it makes a considerable difference to so many lives - maybe i should give it another go with the son... Its never too late as they say!!!

[DaisyProudfoot]

Thank you Daisy

 

My AS son is bright, intelligent, works two years above his maths level and is a natural guitar player. His AS means he finds life very hard however.

 

Reading your posts makes me feel he has a great future ahead of him ..... if only he could combat his obsessions, meltdowns and anti-social behaviour.

 

Let's hope the help is out there for him

[lil_me]

Belive it or not 3 years ago my son had no speech either, and now talk quite a lot like that little boy, but no diet interventions have changed his speech. Sometimes maybe it is coincidence ? OR that it gives parents hope ? From what I can see the children on this video I watched still have some difficulties.

 

I'm not denying these interventions work, just my personal view on it.

 

Daisy thank you so much for posting that, gives us the hope we need. I don't ever want to change my son.

Edited February 21, 2006 by lil_me

[~Jonathan~]

I think us on the ASD are all pretty cool people really. There's so much love, support and encouragement on these boards that it's unreal. This place is by far the most supportive board I've ever been on and without having an ASD or knowing someone that has, we wouldn't have all met would we? <'> everyone

[lil_me]

Very good point Jonothan. I wouldn't have joined this forum if my son wasn't going through the diagnostic process at the time, and I wouldn't have 'met' all the lovely supportive people on it. They do say 'Every cloud has a silver lining'..

[asereht]

I am on a few forums, but this one is the best by far.

[~Jonathan~]

Hi asereht,

 

Is that Johnny Depp in that picture with the guitar? If so, what film is that? Or is it a band he's in?

[asereht]

Yes jonathan it is it's from 'Chocolat' although I think he was or is in a band also.

[baddad]

Hi hailey -

In all fairness, I didn't watch all of this video, but i did watch 15 minutes which included the first two kids being interviewed...

I saw 2 quite socially able autistic children talking to a man with a microphone... I don't know whether there was any 'comparative' (before/after) footage, but even if there was i wouldn't necesarily think it showed anything other than changes that might have occurred regardless - The kind of leaps in understanding my own son regularly makes. Reminded me a lot of my son's early bird videos from when he was 3 - similar sorts of 'visible' skills to the onlooker, but very different in day to day functioning.

For parents who's children do not communicate so well, these videos would look incredibly attractive. To those with children who ARE socially aware and involved they would not show anything remarkable.

My son has autism - his skills in some areas do not detract from that fact.

 

The one thing that DID bother me about this film was that if the man with the microphone had pulled out a beach ball and the kids had passed it around on their noses i wouldn't have been surprised... sorry, i get uncomfortable about performing animals in circuses: I think performing kids is even more worrying.

 

Please forgive me if that sounded offensive - it's just how it appeared to me. FWIW, (and two wrongs DON'T make a right, i know, so it's not offered as an excuse) I find words like 'cure', 'defeat' and 'recovery' hugely offensive when applied to a neurological difference. I try to help my son by accepting him as he is and helping him to maximise his skills. I do not try to help him by presenting an NT model of excellence and saying 'copy that'...

 

L&P

BD

[smiley]

I try to help my son by accepting him as he is and helping him to maximise his skills. I do not try to help him by presenting an NT model of excellence and saying 'copy that'...

 

L&P

BD

 

Well said that man .

 

I would help him to maximise his skills, i would help him to be happy, but i wouldn't want to cure him. He's not ill.

 

Interesting link though - thank you for sharing <'>

 

Daisy You put it perfectly.

[justamom]

maybe i should have posted this in techie but how do you get that pic up of jonny depp or anything else???

[justamom]

Baddad you have a lovely way with words, I totally agree with you i posted earlier that i think that nutrition has played a great part in HELPING these kids but like you say its not a cure and we accept out kids for who they are!!!!

[bid]

Bads

 

Agree completely!

 

FWIW, I've always thought that children who have been 'cured' of their Autism always seem to me to then present as kids with AS or HFA, as opposed to where ever they were on the spectrum previously, if you see what I mean...

 

Bid

[Guest hallyscomet]

Hi All,

 

I want to thank you all for your replies 'especially you Daisy'. I copied that straight from a Forum over here

in Australia I knew it might ruffle a few feathers, but I wanted to see what people had to say about it. Just sharing with youthe way some people think.

 

I was going to say jokingly 'they hired rent a crowd" personally I too am against the term 'Defeat Autism Now" for the exact reason as our Daisy has come forward.

 

Thank you Daisy, we parents want to hear your stories more than ever, we as parents want to know "what your loved most about your parents as I know they just guided you" but they are doing something right - this is what we parents here want to understand from your perspective- what stands out that you remember that you are so independent and loving everything about you. This is what I want to learn so I can be this sort of parent to my son.

 

Would you mind sharing Daisy. I have only just come on the forum this morning as its actually 8am here I am from Australia - I started a thread "Feel good Stories" this is the sort of story we want to hear - how you love who you are etc. would you mind if I copy your post above over there, or would you please copy your post there, much better still I know there are a lot of people out there that feel like you - but as parents we don't get to hear these stories- we are still learning how to be good parents - to guide our ASD children in the right direction. You said it all. <'> <'> thankyou. We want our kids to feel happy like you.

 

Hailey

[DaisyFulkirk]

Wow I have had lots of messages and posts from what I said up there!

 

Hailey, I think there are lots of reasons why I am quite assertive and quite positive about my autism but I did just want to say that I know it sounds like my life is all great but it's not exactly perfect, I get really lonely sometimes and I like my Personal Assistants very much but its very frustrating because they don't always know exactly what I need or want and sometimes it's hard to tell or show them.

 

Here is a true story for you. When Daisy was a little girl at primary school and not diagnosed as anything except 'precocious' and 'strange' and 'grown up for her age' and not very happy with it, a little girl with quite severe cerebral palsy came to the school and Daisy was fascinated by this girl - a year older - and watched her, stared at her a lot and with her talking machine this girl started to make friends with Daisy. Then this girl, the one with cerebral palsy, I will call her 'Rachel' but it's not her name same as Daisy isn't mine, her mum invited Daisy to go to a group for disabled children at mainstream school with Rachel. It was a group run by some disabled grownups and their children, some of whom were also disabled, and there were children from all over the city there who were amongst the first big group to be in mainstream schools. Daisy was 9 when she started going to this group, and it was there that she first started learning about Rights and Politics and about being assertive and confident about yourself. The group finished when all the children in it turned sixteen because they were all so busy with other things, and now all those children are 20 and 21 and 22 and spread all over the country at university or college or just left home, but they've all got some things in common, even though they've got very different disabilities: they're all articulate, even the ones that can't talk, they're all confident and assertive and they all know a lot about the 'language of rights'.

 

In a way I think I have been brought up by the whole disabled community, not just my parents (who are not disabled but quite 'aware'), and I think that's the best thing that could have happened to me. There's nothing to make you feel good about yourself like being told that you are 'brilliant' by the people that did all the really major protesting in the 70s that resulted in ALL the rights we have now. My dad says its like Paul McCartney telling some kid that they wrote a really good song.

[Guest hallyscomet]

Thanks Daisy you have given me a lot of insight for my 18 year old son, that I am really worried about at the moment. <'> <'>

 

You are brilliant, and like sunshine to all us parents

 

I just sent you a PM

 

Regards

Hailey

[Malika]

Hi to all.

 

Thanks Halley once again for sharing with us. <'>

 

Baddad I completly agree with you I watch most of the video and I thought those kids have autism they just are very similar than my son and my son who had severe language delay had this kind of developement without any intervention except lot of love from myself and his sister enclined to drag him into game and exercises he would not do without her and his granny and now lot of "rough" play with his step-dad.

 

I am not saying that diet and vitamins do not help after 3 months of H being in a difficult time I can see an improvement it may be because a month ago I started to give him some extra vitamins (A B C D) but it may be that he is just better because he had so many cold and flue that it was too much for him. but when he was young I gave him Eye Q oil and B6 but did not see any diferences, but I know that he needs a diet with lot of fresh fruits, I think may be our children are all different in a way and may have different need and some intervention may be right and some indifferent because for any of them reaction are different.

 

I am feeling uncomfortable however when I watch those kind of "Americanism" they are so over the top everything seems to become a kind of circus parade.... I would not like to see my son participating in anything like that. Somehow I cannot relate to it I don't want my child to be a kind of living miracle I want him to be happy with his ownself today he came to us and said "I am happy" and this is the most wonderful words I can hear from him.

 

Daisy amazing thanks. <'>

 

Take care all.

 

Malika.

[Strange girl]

I get quite upset with this kind of attitude and especially the wording, 'recovered'.. It sounds like they have come off drink or something and it is very negative and patronising IMO.

 

I agree with most of the things being said so far. Watching the clip with the kids and the mums, I saw a child like my own son, who also didn't have language at 3.. but my son is not recovered autistic. He is living with HFA. I don't think these miracle claims are helpful. It could give some parents unrealistic expectations and hopes for a magic wand to take away the autism. It reminds me of the claims that gays can be cured of homosexuality and left handed people should use their right hand instead. It's intrinsic to a person's composition. It's how you handle the diversity that matters, having a positive attitude and persevering with getting the most out of what we've got. Eradicating parts of the person from their make up doesn't seem plausible or even advisable. I think variety in the population is not a bad thing. It can be more challenging as a square peg in a society of round holes, but there are positives to being different. Think of all the achievements and contributions that people on the spectrum have made in the world often thru thier AS traits. Not just people like Temple Grandin, Michelangelo, Jonathon Swift, Patricia Highsmith, Isaac Newton, Stephen Wiltshire, for example, but our own children and even those here on this site who are parents with AS and in many cases raising children on the spectrum.

 

I think everyone happens for a reason. I think its a bit neo nazi trying to conform everyone to a stereotypical ideal of what people should be like.. I am all for anything that makes life easier or more accessible for ourselves and our children. I would encourage more acceptance and understanding rather than enforcing massive changes to children with autism so they appear more NT. (for whose actual benefit is 'appearing' NT? ) Surface appearances can take a toll internally. At the expense of myself I pretend to be normal all the time, but I can't sustain it continually. I need lots of social breaks and even if I can immitate normality satisfactorly most of the time, it does not mean I feel it inside or that it is coming naturally to me. It's hard work. I don't want to 'recover'. I just want to be myself. I want my son to be himself, so long as he is not hurting anyone. If I nag him to 'act more normal.' it's because I don't want other people to be horrible to him. Some of the nastiest people appear so 'normal'

[call me jaded]

I really think it depends on where on the spectrum your child is. We started GFCF over four years ago and have continued a slow and cautious path with other interventions.

 

Before we started

 

* he had the attention span of a gnat - 10 seconds was good

* he actually climbed the walls with hyperactivity

* he had constant diarrhea

* he had fallen off the growth and weight charts

* his immune system was very poor - he caught every bug and took ages to recover

* he was not aware of his surroundings for a great deal of the time

* he was aggressive, especially towards me

* his sleep pattern was very disturbed

* he used to sweat so much at night that the sheet was wet in the morning

* toilet training (he was 6) was a dream

 

He has made outstanding progress in all those areas and significant progress in others. Would he have matured anyway? That's a difficult call, but I am fairly certain he was so malnourished he wasn't far off hospitalisation. Are these really symptoms of autism? It really makes no difference to me, except it wasn't until he had the label that I knew where to look for information.

[baddad]

Ooer...

 

Right, first and foremost - I think daisy fulkirk is amazingly bright and positive and talented too...

 

I also think , though, that the 'heroic' view of autistic people's successes can - in terms of wider perceptions of disability - be just as damaging as the 'tragic' stereotypes, because it focuses on 'difference' rather than acknowledging the individual behind those achievements...

So, in a nutsell, daisy is lovely, but she's not lovely because of (or in spite of) her autism - she's lovely because she's daisy!

 

Hope that makes sense, and hasn't offended anyone... Reading her posts, I'm fairly sure someone who won't be offended is daisy herself

 

L&P

 

BD

[DaisyFulkirk]

Thankyou baddad, I think that's what I am trying to say! I am not a hero I am a relatively confident (at least on the internet) and articulate product of a Daisy-friendly segment of society. Some people who don't know me well and see me only in 'real life' where I do not have the benefit of a keyboard to write on (I am very much more eloquent typing than speaking) and especially only in stressful situations like workgroups at uni... have a very negative view of me, because they only see a Daisy who either interrupts a lot or says absolutely nothing, and chews on her fingers and clicks pens and really hates having someone sitting too close.

 

I have done awful things as well as the good things in my life, I had a big problem with compulsive lying for a while when I was a bit younger and really upset a lot of people when they found out, I still have a lot of problems making friends, and I'm not going to get nearly as good a degree as someone with a brain like mine ought to get because I'm lazy and really bad at being organised and getting work done. I'm struggling to control my weight and I'd like nothing better than to have a boyfriend, even a husband and a family one day but it seems like I'd have a better chance of winning the lottery. So... not so perfect, really, just as flawed as anyone, its just there aren't so many good places to say that kind of thing on here.

 

Ooer...

 

Right, first and foremost - I think daisy fulkirk is amazingly bright and positive and talented too...

 

I also think , though, that the 'heroic' view of autistic people's successes can - in terms of wider perceptions of disability - be just as damaging as the 'tragic' stereotypes, because it focuses on 'difference' rather than acknowledging the individual behind those achievements...

So, in a nutsell, daisy is lovely, but she's not lovely because of (or in spite of) her autism - she's lovely because she's daisy!

 

Hope that makes sense, and hasn't offended anyone... Reading her posts, I'm fairly sure someone who won't be offended is daisy herself

 

L&P

 

BD

[baddad]

Thankyou baddad, I think that's what I am trying to say! I am not a hero I am a relatively confident (at least on the internet) and articulate product of a Daisy-friendly segment of society. Some people who don't know me well and see me only in 'real life' where I do not have the benefit of a keyboard to write on (I am very much more eloquent typing than speaking) and especially only in stressful situations like workgroups at uni... have a very negative view of me, because they only see a Daisy who either interrupts a lot or says absolutely nothing, and chews on her fingers and clicks pens and really hates having someone sitting too close.

 

So... not so perfect, really, just as flawed as anyone, its just there aren't so many good places to say that kind of thing on here.

 

Thank you daisy... you know what really get's my goat? How far do those other people have to move their perceptions to incorporate you into 'their' framework? Millimetres! If they did that, they would see all the 'good' stuff we're getting access to here... That's another point i was trying to express - that focussing on the 'difference' stops people from seeing how much is the same - can't see the wood for the trees...

 

As for the flaws... try putting them in your signature (see 'bighead' quote below ) that way you don't need to find a place on the forum - they go everywhere you go.... One other thing about flaws - they're what make something interesting... A Penny Black's worth three times as much if it's printed on a slant, and black pearls cost three time as much as white... Me, I'd LOVE some flaws. Oh the burden of being perfect

 

L&P

BD

[Malika]

Baddad once again I agree what is worrying I think is we will then get that kind of non sens "I know somebody's son who had autism and he is fine now" or "did you try this or the other it does work" while it may work for one but not the other and the child who may have made so much progress had just a different expression of autism and it will become once again the parent fault if their child has not made such progress or may be because they cannot afford private therapy or they have not tried hard enough.

I feel that there is more and more in the air some kind of patronizing messages before we had mainly to be confronted to some form of denial now there is more awarness this is manipulated to say "well after all autism is not a real disability and if you try hard enough your child will recover". "and if he doesn't ask yourself why?

 

Which does not mean we should not try anything just that something which may work for a child may not work for another one!!

 

Take care. <'>

 

Malika.

[microsoft_admin]

If I wasn't autistic I wouldn't be me. If you took my autism away you wouldn't get a not-autistic person, you'd get a non-person. It is in every aspect of my life, the good things and the bad things, and all of my friendships, a lot of which are with people 'different' from who you would think a 20 year old woman would be friends with and I think my life is all the better for having friends who are in their 30s and 40s and 50s and 60s.

 

People call me clever and talented and caring and affectionate and, yes, autistic and obsessive and sometimes quite anti-social and all of those things are part of who I am.

 

I am doing a degree at a really good university and I passed my driving test first time and I got four A stars in my GCSEs and my grade 8 in music when I was 15. I don't know if I would have done any of those things if I wasn't autistic, they're better than what either of my not-autistic younger sisters have done so far even though they're more independant and more confident in new places and have much more 'normal' friends and boyfriends and things like that. Are they 'better' than me just because they're not autistic and I am? Thats what frightens me about all this 'treatment' stuff, which I think is not currently a real possibility anyway, I don't think you can honestly make someone un-autistic.

 

 

I AGREE WITH THIS STRONGLY