Tuesday, 5 January 2010

The hypothetical cure question....

"If I could snap my fingers and become non autistic, I would not - because then I wouldn't be me. Autism is part of who I am."

And that is how I see C. Autism is part of who he is.
Therefore I have never given any thought to the hypothetical question of ’curing’ C of being himself. Autism is his way of being. So I feel it is not my choice to make. It is not about me.
Jim Sinclair says it very well in his article Don’t mourn for us.

I was thinking of giving up blogging as C is doing well. Or maybe just doing the odd post if I had something to say. So when I saw this post - as C and I were talked about in some of the comments I felt it warranted a reply. So I gave it some thought.

And this is what I ‘honestly’ think...
I see Autism more of a difference than a disability. But I do see C disabled by society by attitude and prejudice, exclusion, lack of resources and at times the wrong support, Etc.

So if I were to give C a magic pill – a brain altering drug. Would he become ‘normal’?? Or would he still be 1 of thousands of NT people who self harm? Or would he be an NT who goes to heavy metal concerts and head bangs?! Would he still have gastro problems? Still thrive on little sleep? Would he still prefer to be a nudist? Would he still have a foot fetish?! Would he still get excited standing on platforms in his anorak watching trains? Would he loose his passions and excitement of the things most of us don’t even notice?
These are all normal traits that C already has. OK so maybe a bit more extreme!

There are many tangents/debates around all this. Low and high functioning. What about other comorbid conditions. Children who have tragically died from various therapies or restraints. Or murdered maybe from fear or lack of support? Disability is normal. Parental genetic testing? Prevention. Eradication.

So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?!
Why can’t society accept everyone is different?

The journey to acceptance is different for everyone as we each have our own issues to deal with I have seen some parents get stuck at different stages (especially anger). And as a society we take even longer as we have seen with differences of ethnicity, gender etc. Diversity is overlooked within groups and produce stereotypes that can reinforce prejudice and discrimination. And so it goes on.

Yes life has been very difficult at times for C and so in turn for me. But there is also much joy.
From the first day C started head banging (he even does this when happy) i have looked for ways to give him other means to communicate. He had early intervention. Went to the best schools i could find and has been under a Challenging Behaviour specialist team. I continue to look for ways to help C communicate without hurting himself. And make sure there are people around him who understand him and want to support and help him to. And C continues to show progress at his own pace. Acceptance doesn't mean doing nothing.
We all struggle at times. No one is truly independent. C does have a quality of life even with severe challenging behaviour. Which is what I have tried to show through by blog rather than ‘blowing roses’.

Education is the key. Not only for our children to help them reach their potential but to society as a whole in raising awareness as one of the biggest problems that I see is the way many people view autism.
It’s such a shame that this hypothetical question divides our community.

Follow up

Harold has continued this discussion on his blog - Autism Cure? It's About Functioning Not Conformity.
Kev from Left Brian/Right Brain has offered his opinion - So what is ‘cure’?
And the lovely Starrlife writes about Removing the Essence

94 comments:

Rob Thomas said...

here here, well said Jen. Appreciate, Accommodate and build rapport, take time to listen and learn, try not to supress or change becuase you think its wrong, ask the person, view life as a positive, support strengths and interests, after all relationships are often built on success not failure, Rob, Wales

Elissa said...

I had someone ask me the hypothetical question some time ago... "Would you take away the autism from your children if you could?"

"No" was my answer, "no, because then they wouldn't be them".

You're right Casdok - awareness IS the key... that, and acceptance...

Much love to you and C xx

KWombles said...

What a deep, thought-provoking post that resonates, I hope, with all that read it. I think, though, it will do nothing to move those who seek a cure because they have a mythical construct of their perfect child in their head that if only autism weren't part of it, they'd have that perfect child. They would also reject the premise that all of us struggle, that struggle is a key component in life and unavoidable.

Recognizing that there are those for whom acceptance is not an option may be necessary so that we can, like the body does with infection, wall it off to contain the damage they would do not only us and our children, but society as a whole.

Julie L. said...

Excellent Post. :) You state your views on this topic quite clearly. I hope some of those commenters from the other blog see this and reconsider their thoughts on this matter...especially the "blowing roses" lady!!

farmwifetwo said...

It's not the matter of brain transplants that the ND crowd likes to think someone wants to happen but independance.

Is it "OK" for him to be stuck in an institution - which even a small group home is - for the remainder of his life? Is it "OK" for him to do without friends, without a family to call his own, a job....

You speak that society must conform... HOW?? "Well just give him more supports"... What kind?? "Be more forgiving".. How??

You have never given concrete examples. Neither do the ASAN and others...

I have one (10) that will now be independant... Technically cured... does this make him less than he is or does this make him more than he could ever have been. I have one that will probably never be independant (8)... And I don't think that's fair at all. Do I blame him, hate him, treat him less than his brother. No, never have, never will... but for those that speak for themselves, who don't have my son's difficulties... How can they say "don't mourn for us", when they have nothing to mourn the loss of???

JoyMama said...

You've come to a powerful stance through a long and challenging journey -- I respect that immensely. I'm still figuring out the subtleties of a position for myself... but I very much agree that the depth of division in the community is a shame and generally produces far more heat than light.

P.S. Please do keep blogging -- you & C make me think, and make me smile!

secret agent woman said...

It sounds like blogging has served its purpose for you.

I'm very glad to hear C is in a good place and doing well. I watched "Music Within" last night, the true story of a Vietnam vet who became deaf in battle and made it his mission to change public attitudes about diabilities. It was a wonderful movie.

starrlife said...

I've gotta link to this post because it says it perfectly. Taking away my child's difference is detracting from the whole of who she is and the person who I love completely.I love her difference. I love her. She is the best thing that ever happened to me and I wouldn't change anything but the world around her! Love you- hope you don't stop altogether- I'd miss you and your wisdom! But I'd wish you the best....

Mrs. C said...

I think it is truly a hypothetical question, though. If by "cure," one were to tell me that it would not change his true personality, and that my child would be able to speak and function and that he could someday go to a restaurant and a movie and all those sorts of things children ought to be able to do, I would say yes. (hypothetically)

If by "cure," we're talking about genetic selection, abortion, killing people and/or drugging them to the point where they are no longer themselves, I sure don't want anything to do with that.

I think as a "community," we're all divided because there's such a fine line between parents trying to truly HELP their children, and abuse. I have fallen victim to school people telling me that they could help Elf the way they did. It took me a while to convince my husband that what was going on was wrong. Sometimes parents make mistakes, and they are tragic. So I try not to judge other parents... but work toward helping them accept their child as he is (usually it's a he we're talking of) and work toward helping him with the behaviours that don't help HIM function well.

Autism Reality NB said...

"It’s such a shame that this hypothetical question divides our community."

It only divides the "autism community" because some people who would not want a cure, or who would not want their child cured, insist that others not seek a cure for themselves or their children.

I can not insist that you cure your child of autism. You have no right to insist that persons with autism who would like to be cured not seek a cure. You have no right to insist that parents refrain from seeking to cure their children of their autism disorders.

The walls, as Ms Wombles brags, are being built by those who believe they have the right to impose their autism is beautiful ideology on persons who do not share their views.

Have a great day on your side of the walls you have built.

Jen said...

I'm sorry that you and C have to be a talking point, or a bludgeon or example for different members of the community to use against each other. I admire and respect your courage in continuing to blog.

My kids are autistic, and I love them dearly. What I would like is not to have to worry if my son was going to kill or injure himself or someone else, and for our family to be able to live together, but that quite possibly has little to do with autism. I know enough NT people who self-harm and read about enough NT people who kill others to to realize that autism is not always the problem.

More than anything, I want to be able to help my son communicate, for society to respect and welcome and value he and his sisters for the wonderful people that they are, and for supports to be in place so that they can live their lives happily and productively. The amount of time, energy and money spent looking for a cure at the moment could be doing a lot to help people with autism now. While everyone's pouring their energies into finding a cure, who's creating jobs for autistic people, or safeguards so that they don't spend their lives in dingy institutions or living alone in poverty? It's all well and good for the parents of a 10 year old to say "they'll live with me forever", but what happens when you die? I can imagine the stress of a 60 year old adult who's never lived anywhere except the family home when all of a sudden they're moved into a group home.

We need education and activism to help autistic people now, and that tends to get lost in the rhetoric about a cure which just isn't anywhere close to being on the horizon. That's why a lot of parents object to the resources being put into finding a "cure", and it doesn't always have to do with idealogical principles.

Queenbuv3 said...

Thank you for being such a wonderful and articulate advocate for people on the spectrum. Please don't stop blogging. I feel like their are already so few of us that love and accept someone on the spectrum and we all need to keep putting a face on our point of view. I am so angry and sick to my stomach everytime I see, hear or read another rant about "curing" Autism and how it's an "epidemic".

I too love my son "warts and all" as they say and fear that the majority in society is trying so hard to eradicate everyone on the spectrum or at least make them "normal" whatever that is!

Please, please, please keep blogging. I don't care if it's once a month or once a year. I will be here waiting for a blog post from you : )

jess wilson said...

this is the part that was hardest for me to finally interalize ..

Acceptance doesn't mean doing nothing.

i wrestled for a long time with the difference between working to mitigate challenges and eradicating something that informs nearly every part of who my girl is.

but at the same time, i do understand the desire that some have for what they call a cure and i will stand beside them as they search for answers.

above all - i believe that we must respect each other. we can't ask the world to exercise compassion to our kids if we can't even manage to show it to those within our own community.

therextras said...

I believe your blog is effectively educating many, Casdok. Heartfelt thanks for continuing to give us the words to continue the education.

I use the word acceptance and feel so pumped that you choose that word, too. "Acceptance doesn't mean doing nothing."

Emphasizing the slippery slope you depicted: Parental genetic testing? Prevention. Eradication.
Noting the 90+% eradication of persons with Down syndrom.

Societal education and acceptance is THE path. Elsewise, we go down that inhumane road to euthanasia.

To be autistic is to be human. Innately and naturally valuable. Barbara

bobbie said...

There is no such thing as "normal". and most certainly, "Education is the key" as you say - education of the public. And of the medical profession.

I saw the mother of an autistic child on TV the other day, expressing her frustration at yet another statement by doctors that diet has nothing to do with helping the autistic. Maybe it does, maybe it doesn't, but this mother saw a difference in her own child. How can sweeping statements be made by professionals, when every child is unique? Every human is unique - old or young, autistic or not. But they keep drawing their conclusions and making their statements, as if anything can ever apply to everyone.

mommy~dearest said...

Excellent post, Casdok. :)

Green Girl in Wisconsin said...

As always, your post is stunning, enlightening and makes me better for having read it. Thank you.

kristi said...

I used to feel that I would do anything to help TC not be autistic. But....after years of dealing with it, I feel it has made me a better person and I would not change it.

I don't think you "make it all rosey" either. You lay out yours and C's reality. You don't make it sound nice and easy because it hasn't been.

Akelamalu said...

Excellent post m'dear. We are what we are meant to be. x

Cheri said...

My son, Zach is 22 now and has autism. I can accept him for who he is, but he is not happy. Even as high functioning as he is, his autism limits his abililty to fulfill his dreams. He wants a college education, he wants to have a good career and possibly even a family someday. He wants to be able to think problems through without being interrupted by intrusive thoughts. He wants to have real friends and friendships.

He has told me he would take a cure if one is found, but he is very much against curing autism through abortion or irradicating autism through eugenics. He would not accept those measures as he is grateful for his life and wants to live as much of it as he can.

It is terrifying for me to see so many people who are so quick to take advantage of him and harm him without a second thought. If a pill could take away his autism and prevent his pain, I would give it to him in a heartbeat.

Ideally, people would accept those who are different. However, none of us live in a world where that is going to happen. Humankind is a long way away from true individualism.

Debs said...

Thank you for continuing to blog. Reading your post has taught me so much about autism that I never would have otherwise learnt.

Crystal Jigsaw said...

Our children are beautiful and loved unconditionally whatever they are. I couldn't imagine Amy not being autistic. There have been times when I have wondered what she would have been like had she not been autistic but those moments only last seconds. My daughter is autistic. She is my whole life and I wouldn't want her any other way. Because then she wouldn't be my daughter.

A wonderful post, Casdok.
My love and best wishes to you and C.
CJ xx

Joker_SATX said...

Jen,

A good post. Especially on how you described the world around an Autistic Child as "Normal" versus the child with Autism.

I have an Autistic Step Son. I try my best every day to sit in his seat. To understand what he is going through.

What matters most to me is how he will function when I am gone. My wife and I are his world really...outside of school. And both of us know that we won't last forever.

We can blame society for the lack of understanding. We can blame society for excommunicating children like ours. But at the end of the day, my step son will need the basics. Will need to be able to fix himself a meal. Will need to be able to wash his own backside. He is not there yet. Its a day to day struggle to get him there. And both my wife and I know that we are living in a rental. We hope to live as long as he does but the reality is quite the contrary.

So, I really don't care about the outside world. I do care about what my step son accomplishes in order for he to function within himself and his surroundings.

Again...great post!

Wicked said...

I can imagine the stress of a 60 year old adult who's never lived anywhere except the family home when all of a sudden they're moved into a group home.

Having run group homes for clients with mental illness, I saw clients who only lived at home until both they and their parents got quite old. It's a really, really difficult transition. Whatever you do, don't do this to your kids.

Get Off My Lawn! said...

Well said. I wouldn't change a thing about anyone I know.

Jade said...

Well said my friend. You are a wonderful voice for C and autism alike. I hope to see you around for a great while longer. If not talking about autism..talking about something else about life ;-)

Pseudonymous High School Teacher said...

I came from starr's place and found your post and the discussion in the comments very interesting. I am a public school teacher and have had high functioning autistic students included in the my class almost every year. I had even had a TA.

I have found quite a bit of diversity in the parents of autistic students - some were wonderful, some very controling of their kids and the system.

Club 166 said...

How could you even consider stopping blogging? Glad you've gotten that nonsense out of your brain...

I think the "cure" question is a kind of Rorschach test for the autism community. Everyone sees something different, depending where they're coming from. Unfortunately it's also become a quite polarizing question, too, as many (on both sides) assume a certain "set" of beliefs on your part, depending on whether you answer yes or no.

I think that there is a lot of agreement between people with seemingly widely divergent viewpoints, once we get rid of the labels and get down to brass tacks.

Joe

Justthisguy said...

Foot fetish? I think I recall reading that that is so common as to be damn' near normal. I give you, e.g., Imelda Marcos, and every other woman I've ever met. If I had the bucks, I would invest in firms which sold shoes to wimmin.

Yes, I too likes me some cute girl tootsies. I give an excellent toe job, if I do say so meself.

Tanya @ TeenAutism said...

"Acceptance doesn't mean doing nothing." Amen to that. And you do so much - thank you for that. I hope you continue to "check in" with a blog post every now and then! I always look forward to reading how you and C are doing. Much love to you both.

only a movie said...

Hi - stopping by from Starrlife. I'm a special educator. I wish more people had your view point. :-)

Rosie said...

people do like to simplify things. Your post explains your postion beautifully in all its complexity.
The one simple fact that I retain is that knowledge is the key. The more that society learns about the diversity of each of its members, the better able we are to understand each other's needs.

Foresam said...

Casdok,
You asked yourself the wrong question. If you knew that the vaccines were the magic pill that caused the autism, would you give him the vaccines again?

Thanks to your "friends" in ND, you don't know the truth.

xine said...

If only more people had this attitude... I've seen parents absolutely destroy their lives because all they can focus on is curing their children, when in fact all they've done is caused a lot of pain to their families, communities and themselves.

Providing treatment to these kids in order to overcome hurdles related to their autism and helping them be understood, loved, happy, and have a full life is what the goal should be.

Jocelyn said...

First off, I would hate for you to give up blogging, as you add a very necessary voice to the blogosphere. Secondly, I appreciate the distinction you make about where the disability lies: in society and its attitudes.

Thank you, as always, for teaching me something.

Paulene Angela said...

I really do hope that you continue to blog, even if it's less frequently. Apart from being a wealth of knowledge, I'd miss you.

Cured! It's a very personal issue. I understand both sides.

joker the lurcher said...

jen - firstly i was appalled that people are writing about you and C in comments on someone else's blog - i cannot imagine how i would feel if that was me. its one thing on your own blog but it just seems wrong to me.

secondly, i am with you about the cure thing. i am sick of reading about children who have been killed by chelation or attempts at exorcism.

keep on blogging - we love to read your stuff.

Suburbia said...

Glad you have not stopped blogging, I always enjoy reading your considered views.

okasaneko said...

Please, please do not stop blogging. You are a great inspiration to many of us who seek to become better parents everyday, whether it be to their NT children or their children with autism.

I'm with you on this issue, Casdok. Very well said.

Seamus said...

Once again, your post is one that is thought stimulating. As a couple who doesn't have autism in our sphere of influence it always begs the question of "how would we be, or how would we react".

Hammie said...

Cas: you and C are a constant source of inspiration to me. Even on the worst days when I curse Leon Eisenberg, Hans Asperger, Leo Kanner and the horses they rode in on; I think Of you and your unconditional, guiding, aspiring, devoted and crusading love for C.

There is no fucking cure already!

As for all the stuff people try? Spend your child's resources wisely - as they are finite and no intervention is worth hurting them.

As for me? I read too many Greek Tragedies to believe for one second that we can escape our fate or genes or basic nature. But given the oracle that said "Autism" I would change me and the way I dealt with it- not the children I have.

Anyone who doubts this needs to sit down and talk with an infertile couple who have been through too many IVFs and are now being messed around with adoption.
They need to talk to the parents of the serious and profoundly disabled, whose children may never grow up - who may never make it home from hospital

And they need to talk to the parents of children who did not come home.

Take what the dice or the gods or your genes have given you and be grateful every day for the gift. Live the life you have, Now!

Cas- if you ever want to put a sillouette of yourself and C on a t-shirt, I would wear it. xx

DJ Kirkby said...

I wouldn't want to be 'cured' there is nothing that needs curing in me. Sure I'd like my life to be elss of a struggle soem days but who deosn't feel like that? I like being me and am proud of what I've acheived.

DJ Kirkby said...

p.s. please don't stop blogging. xo

Honeysuckle said...

I so admire your stance and the huge efforts you've put into accommodating C's needs and behaviour, but still I wonder about Jim Sinclair's claim that there's no 'normal' child within the autistic one - it doesn't seem to tally with the issue of sutism first showing at 18 months or so. What happens to that non-autistic child that seemed to be developing?
The other thing that would make me wish for a cure for my son, Buster, would be the hurt I see in him when he's laughed at or excluded, and his sure knowledge that this is because of his disability. Buster has Asperger's and cerebral atrophy and is acutely aware of his poor social skills. Having poor (tho' not disabilty-related) social skills myself which I've honed into something approaching normality over the years, my heart aches for him and I'd do anything to make that right for him if I could. More severly autistic children perhaps (I don't know) aren't aware of how others see them, but those with Asperger's suffer depression and feelings of worthlessness due their difficulty making friends etc. It'd be too easy, wouldn't it, to see this as society not accommodating them?

It's lovely to hear that things are going well for C and for you these days. Long may it last.

Anonymous said...

Bookmarked this. Thank you against sharing. Unequivocally worth my time.

jazzygal said...

Sorry casdok...I really don't know what to say to this.

I can kind of see both sides actually but I don't like the use of the word "cure". Yet I don't think anyone is using that word in it's obvious context.

I do think that you are being grossly misunderstood though! There are some rough comments that I don't think you deserve.

I think DJ Kirby says it best :)) It's all we really want for our kids..."life to be less of a struggle some days".

I don't want to change anything that's made my son "him" but I've done my damnedest to ensure that life is indeed less of a struggle for him.

Greta post Casdok.....and please , please keep blogging! xx Jazzy

Anonymous said...

Well, it's a hypothetical question right now. That's why it's easy for you to say that you would not take a 'cure' for your son, or unilaterally say that it is his choice to make (assuming a real cure existed and not some quack regimen).

It's not true that you would not want to change him. After all, you are trying to educate your son, and to teach him to communicate without hurting himself - all those are aspects of changing him.

If a possibility *really* existed of removing some of the most challenging aspects of his disability, I am pretty sure you would take it, no matter what you say now.
After all, if he had some other condition (e.g. diabetes), as a parent you would feel it your responsibility to get him treated for that (since a proven treatment exists).

Of course, no-one is perfect and we all wish for cures for some of our own quirks. Of course society needs to be much more accomodating. Of course, much more resources and accomodations are needed for people with different abilities.

Having said that however, I will bet you all the tea in China that if a real cure was developed, almost all would take it. Temple Grandin can afford to talk - her degree of disability/difference is much less.

I too would be sorry if you stopped blogging - your site is very inspirational for all of us parents of 'different' children.

Autism Reality NB said...

"So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?!
Why can’t society accept everyone is different?"

You have just provided your definition of cure by rhetorical questions framed in the language of those who do not view autism disorders as disorders.

I don't know why you obtained an autism disorder diagnosis for your child. We sought medical attention for our son without knowing anything about autism at that time. We sought attention because he wasn't developing any communication or other functioning skills anywhere near the level of his older brother or any other child we had known.

Cure? Cure would mean providing our son with the same, or similar, ability to understand, function in, even participate in the world that you and I take for granted. Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm? Do none of you ever read of the other autistic persons who are lost in traffic or wander away as did Keith Kennedy to be lost in the woods for a week? Are none of you aware of issues of serious, even deadly self injury that affect the severely autistic?

I have been involved with autism advocacy in our home jurisdiction for a decade now. I have visited institution where severely autistic persons live dependent on the care of others. I have helped some persons with Aspergers in the legal system. I have advocated with other parents, successfully, for pre-school government funded autism interventions and for accommodation of autistic students in our neighborhood schools.

Of course I want my son's disability to be accommodated and I have used to all my abilities to ensure that happens for him and others where I live. But he, and many others with Autistic Disorder, will live their lives within a facility dependent on others with limited understanding of the world.

All cures are hypothetical, until sufficient research is done to find one.

If I could snap my fingers and cure my son, resulting in him having the ability to understand the world more fully, to communicate more fully, to function and survive independently would I do that?

You're darn right I would.

Queenbuv3 said...

Why is it so easy for people to scream for a "cure" for Autism yet would think it ridiculous to do the same for Alcholism and drug addiction?

Both Alcoholism and drug addiction make people unable to function as a part of society. The same argument is used as a justification for curing Autism.

Addictions leave people vulnerable to being taken advantage of. This same argument is used for curing Autism.

Addictions cause self-injury and death to the individual afflicted and people under the influence kill others. This is the same argument people use for curing Autism.

There is a huge amount of crime and destruction resulting from Alcoholism and drug addiction.

Yet people afflicted with Alcoholism and drug addiction are treated on an individual basis. They are given help in the form of rehab. They are treated with compassion and forgiven by those they hurt.

The affects of Alcoholism and drug addiction on the individual afflicted, their friends and family and society at large can be many.

Not everyone who drinks is an alcoholic. Not everyone responds to rehab. Yet, no one is screaming for a cure and pumping tons of money into finding the genes that cause these addictions so all people who MIGHT develop problems can be eradicated.

Maggie May said...

Excellent post. We are all meant to be who we are meant to be, I guess.
Acceptance seems to be the way forward. We are all on the autistic spectrum somewhere.

Nuts in May

Robert said...

Great post. Valid points.

Ron said...

Hello Dear Casdok!

Sorry to be late in commenting on this FAAABULOUS post!

First of all, PLEASE don't stop blogging. Even if it's only once or twice a month because what you share here is so beneficial to not only those involved with autism, but also those of us who need education.

I could go on and on in this comment, but I would like to ditto what Akelamalu shared..."We are what we are meant to be."

I know exactly what it is that you're trying to say with this post and I agree.

You hit it right on....

...it's about acceptance.

And you exemplify that to a T, dear lady.

Bless you!

Love to you and C.

Honeysuckle said...

Queenbuv3 - a cure for alcoholism and drug addiction would be gerat! I teach teenagers, many of whom have drug and alcohol problems and some of them would love to be able to take a pill and be cured. I don't get what you're saying at all...

motherx said...

I really have a lot of respect for all your views. It is not easy for any of us in this situation. Acceptence would make things a whole lot less stressful but if I personally had the chance of a cure to make my children have a better future I would take it in a heart beat. Everyone has their own opin, there is no right or wrong answer.

Kowalski said...

Great post, Casdok! :)

@Queenbuv, comparing autism with drug, or alcohol addiction is offensive, autism is just a different neurology, and yes in a neurotypical world it can disabling, drugs and alcohol on the other hand are POISONS that can cause severe harm and death.

jypsy said...

"Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm?"

"A seven-year-old autistic boy who disappeared from his Cape Breton home two days ago was found alive, unconscious, suffering from hypothermia and huddled in an area of thick brush and snow on Monday.
[...]
The massive search effort included search-and-rescue teams from around Nova Scotia, as well as hundreds of community volunteers."

James Delory was not "lost forever in a snow storm". Dedicated searchers spent 2 days and 2 nights searching for James after he followed his dog into the woods and the weather deteriorated into a snow storm. James was, in fact, found, and found alive. He died in hospital of extreme hypothermia.

It took searchers twice as long to find Kyle Bambrick:

"He was wearing a light winter jacket and jeans and sneakers. Outside a storm was blowing that would drop 45 centimetres of snow over the course of the day.

It took searchers until Sunday to find his body, and only then after the search had been expanded to what was considered "low probability" areas. They found the body along the Clyde River, about 800 metres from the clubhouse."

Kyle was a non-autistic 18 year old who died, lost in a snowstorm, on PEI, a year ago.

Anonymous said...

My child is turning 22 in March, he cannot speak, cannot use the bathroom on his own, cannot add a simple mathmetical equation as easy as 1 + 1. I have done all of the so-called cures people have said, chelation, oxygen chambers, diets, hippotherapy, vitamins/supplements, the works. Has anything changed? not one bit! I feel incompetent, and a horrible parent at that for treating my child like a guinea pig, but I did it for my wife who believed it would make a difference. Now we're both strong advocates on acceptance, and awareness rather then some "cure".

My son although low functioning is happy, and healthy, that is all I can ask for. Please do not stop blogging, although I don't post often, I always enjoy reading your blogposts. I do not care one bit what people have to say, I have lived with this disorder too long to care or want to desperately seek a cure. What has helped him the most to thrive in this world is and has always been acceptance, continue teaching him about the world, learning from him, and most of all trying to become apart of his mysterious world of autism. Eventually most parents learn this, sadly not as early as they should.

I saw a family on the news going to another country to get injections of adult stem cells. Has it gone to the point that our children are no longer children but just guinea pigs in experiments? Has it gone to the point that it doesn't matter what the child may want or feel, but it matters to the parents more that the child is as normal as can be?

If the child is physically sick, its very understandable to treat that child; However if the child is just autistic, treating that child the same way if they are physically sick is just despicable and wrong! Forgive me as I look upon as so-called cures as disdain. No child should be injected, poked, put through various different treatments that are not even proven to be safe, and healthy for the individual. Until done so, it is considered experimenting. That is exactly what they do on rats, and mice, no child in mind should ever be treated like some labrat.

I do not care whether anybody differs in opinion or not, I'm glad I'm done with the "experimenting" phase.

Casdok, Don't ever stop blogging, your wisdom, your words, are all so needed in this world of online autism community! You give this world a healthy dose of reality to those who only believe in "curing".

Rachel said...

What a fantastic post! Thank you.

I have only recently given in to the necessity of referring to myself as "disabled." Yes, I am disabled *in the society in which I live* because the society is not set up for people who are sensory sensitive, empathic, visual, associative thinkers, incapable of lying, etc. But disabled does not mean disordered, and disabled certainly does not mean that I need a cure. Thanks but no thanks. I'm autistic and I like who I am.

It's the culture that needs to become more flexible, more open, more aware of the incredible diversity of human experience and the fact that every person on earth deserves respect.

Queenbuv3 said...

Kowalski-You obviously missed the point I was making. My son has Autism and I love him more than anything. Go read my blog and you will see that I am a strong advocate for my son and love and accept him.

Anonymous said...

Your son is more like a pet than a person.
He has no friends, will never have a romantic relationship, will never be able to walk into a shop and order a plate of fish and chips to take away. He will contribute nothing to society.
Unlike a pet, he won't even give unconditional love and loyalty. He gets aggressive and attacks you, his aides and himself. Someone has to keep an eye on him at all times.
Neurodiversity is a joke. There is a reason why society has rules and expectations. If we were to tolerate naked, drooling headbangers wiping their own feces over the walls because they are "expressing themselves" then civilization would grind to a halt.
C. is not happy. He is not fulfilled. he is existing like a plant or a fish.
I say it's time to get real and face the truth that autism is a great tragedy that destroys hope and ruins families.
We need a cure not silly hippy dippy sentiments.

Bonnie said...

I find it amazing that the person who commented that C is a "pet" did it anonymously! I hope that they know what an idiot they are and that if they would have really believed all the crap that they said, they would have posted some sort of link to themselves to get feedback. Sick cowards.

motherx said...

Some of the comments are very harsh and upsetting! we all have different opins and people should respect others even when opin is very different from their own. I do not nece agree with everything casdok says but I still consider her a very good friend and would never be so rude. Whether she is right or wrong, the bottom line is she LOVES her child as we ALL do.

buffalodick said...

You have to deal with it- acceptance or otherwise. I think you have been an incredible mother to this child, and certainly an advocate for greater understanding of this condition to all of us that were ignorant of facts..

Kahless said...

I think society needs to take the pill - to get real.

Karen said...

He has no friends, will never have a romantic relationship, will never be able to walk into a shop and order a plate of fish and chips to take away. He will contribute nothing to society.
Unlike a pet, he won't even give unconditional love and loyalty. He gets aggressive and attacks you, his aides and himself. Someone has to keep an eye on him at all times.


All these facts are true. My best friend's daughter is severely autistic and the lack of proper, educated help and daily grind of caring for her has shredded their family life, resulting in my friend having a nervous breakdown last year. It's getting worse now her daughter's turned 12 and started her periods. And yet ...

My friend's daughter has moments of pure happiness - I've seen it, been with her when it's happened, and although it may not be related to anything WE would find pleasure in, it's pleasure nevertheless, and my friend lives for those moments - and for the times her daughter responds to her with a kiss or a look that says she knows who her mother is, and I don't think it's fair to say she lives like a plant or a fish.

If there was a cure? I know that my friend would be over the moon - she dreams of hearing her daughter speak, but it wouldn't make her love her any more than she already does.

Kelley @ magnetoboldtoo said...

I haven't read the other replies. A quick skim is all I afforded them because I would be here arguing/defending/whatever.

I would sell my soul for that pill. I already sold my house for therapy.

If there was a pill that took away the smearing, the chewing, the destruction of EVERYTHING, the sleeplessness, the screaming and squealing, the terror he feels, his self destructive behaivour...

If there was a pill that took away all that...

Not a popular opinion. I have been flamed and harassed by those on the Spectrum for my views, but in my world if you understand you have Autism and you like who you are then you don't need a pill.

Oh and while I am being totally controversial I will say that Jenny McCarthy is a total moron and Autism is NOT caused by vaccines.

Mom said...

I read your post with interest and with relief - someone who shares my opinion! I have two kids with Down Syndrome and I have been at the centre of an online discussion about research into a "cure" for Downs. I have posited a (minority) position quite similar to yours.

If you are interested, you can visit my blog at disability-possibility.blogspot.com where you can read about the whole story...it will take you all the way to the New York Times!

Thanks for sharing your story.

More Than Conquerors said...

Hi Casdok,

Thanks for your visit to my blog. It's so good to hear from you. I missed you so. I have not been able to post or visit regularly but I always enjoyed your post, and your love for C. I think C is a unique individual and gifted in various ways, just like everyone else. We are all made differently and no one is perfect. Acceptance, education and raising awareness is truly crucial. I am thankful that C is making good progress daily and I am praying for him and you. Take care and have a wonderful weekend!

Hugs,
Nancie

Accidental Expert said...

Brilliant post!

I've been thinking a lot about all of the above lately. Education and awareness is most definitely in order. But even that will do nothing if people do not want to learn or accept.

That said, I will hope.

Mistress B said...

By far the biggest challenge we face is not in 'fixing' our differently wired kids, but in increasing the understanding of those that they must have contact with.

Rachel Nixon said...

Couldn't agree more- very insightful piece- dont' give up blogging, I like your writing!!
x

laughingwolf said...

may the new year bring you even closer to one another, cas...

Ellee Seymour said...

Yes, absolutely true words. Wishing you and C all the very best.

Anonymous said...

You and all of your fruitcake friends on this blog would take a cure if it was there and you know it. You are all nothing but a bunch of blathering idiots who love to hear themselves talk while you do nothing for your kids. Get off the computer and stop looking for that pat on the back and help your kids.

Anonymous said...

So you would not seek a cure for C if one existed? You would allow him to remain in an institution where he has been or will be abused, wearing a helmet, self injuring, having no life or job and left alone to the vultures in this industry once you die. He is NOT a quirky, fraud like some of these people who "claim" to be autistic. He is a severe, miserable person obviously. If you would not seek to cure that, if you could, then you are truly a neglectful parent.

And to all of those on here saying what a great mother you are for that, they should have their kids taken away from them. What scumbags.

kathleen said...

lovely. Yes, there are days when I can look at any one of my kids and think..oh I wish I could take away your anxiety..wish I could make everything in the world perfect for you..I think that any parent of any child feels that way at one point or another.
I look at some of these comments-and I think "wow-that person is considered "normal"" Makes me wish for a cure for ignorance and hatred. I think that if those things were cured-this divide/argument/discussion might never have been neccessary. Thanks for this. Thanks for allowing all to be posted-it is hard to hear such things sometimes..

The answer said...

To a cure lies within yourself.
From reading all the comments it is apparent that those parents who accept their child are more at peace. Those who do not come across very angry, bitter and resent and resist their child’s reality instead of embracing it. Negativity does not help you or your child lead a full life.
Your vitriolic attacks makes me think you feel threatened and also does nothing to educate others of your ‘side’ of the wall. By staying angry you are avoiding ‘your’ unresolved feelings. But what you want is right there in front of you. Unclench your angry fist and the very thing you thought impossible will happen. Your acceptance will cure your child.
Let go of your own personal war. Stop being afraid of the future as you know not what it will bring. Enjoy your child for who they are and not what 'you' want them to be.

Joeymom said...

I see good ol' Anonymous has been busy in your comments.

I worry about people who think autistic people contribute nothing to society. C not only has contributed to society, he continues to contribute to society. I have learned a tremendous amount about autism, about thinking about others, about my own child and how to support him through this blog. Joey is not as disabled by autism as C, and our efforts- efforts supported by you through your blogging about C and your lives- Joey will likely be an independent adult (though there are no guarantees in life!) Because Joey sees the world differently than the people around him, he will likely bring new ideas and insights to the world around him. He already does, even with his limited communication skills.

Because of C, we are stronger, and more prepared for the days ahead. We are better able to determine what Joey may need, and work to get him the support he needs. And I am not alone. Your blog helps thousands of people, every day.

That, folks, is a contribution to society. People who fail to recognize its value are, to me, of massive concern. They are the ones who stymie society and damage the lives of severely disabled individuals.

Anonymous said...

Why don't you ask your phoney internet friends if they will be there to support C when you are no longer around and some God awful group home has him. Hey Joeymom, your son will contribute but C won't but it's ok because you have learned so much from him. You fake POS. You could care less what happens to C.

Joeymom said...

Dear Anonymous:

I and my family would be pleased, proud, and honored to support C when Casdok is 'no longer around.' I would certainly take such a responsibility very seriously, and do my best to ensure his best interests were being served and his inalienable rights to life, liberty, and the pursuit of happiness be respected.

I hope to do all I can to support Casdok and C even now.

Your attitude is EXACTLY what I believe is of grave concern for society. Thank you for displaying it so plainly, and why it is such a grave concern.

Casdok said...

Thank you Joeymom.
In February 2010 the Government will be publishing its Adult Autism Strategy following on from the Autism Bill that was passed last year.
The CQC are about to launch their new regulations.
And parents are no longer prepared to accept bad practice. All these things will continue to improve the lives of adults with autism.

With respect I will no longer accept any anonymous comments if they are not civil and/or constructive.

DJ Kirkby said...

I've given you an award. xo

coolkid said...

wow i so agree with you

i also wrote a post about this which is how i got to here as you commented on mine so i looked you up

obviously you know my opinion on this as you have read it, but i really liked this blog xxxx

coolkid said...

oh my god hun

just read some of the comments on your beautiful post, id cry if someone put comments like that up, it really does show the lack of understanding acceptance and how they would put their own insecurities and ignorance before the respect and unconditional love of their child.

autism has no cure but it does have potential

Visite www.arteautismo.com said...

Muito bom este post.
Será que existe uma cura? Ou será que a cura não está em nós?
Concordo com Jen, em vez de preocupação com a cura, devemos estar preocupados como eles vão ficar no futuro, quem cuidará de desses seres tão frágis e doces, que não tem maldade em nada?
Um beijo pra voce!
Ray

Ivy said...

I might be totally stupid , but what would be wrong with finding a "cure" for something like autism? Isn't head banging a sign of anxiety that you'd rather, your son would not have to endure? Do you not think that being able to communicate with words would make him a happier person? I think we should all aim for our fellow humans to live the most pleasant life they can have, not asking to make all people the same. Being not autistic does not make me a mass produces creature that isn't an individual. If you met someone who has a splitting headache would you not give him an aspirin? would it change his or her personality?
I have a child with a chronic disease. Nothing life threatening, as long as it is treated. If there would be a cure for it , it would make me incredibly happy to see him cured, but he would still be the same person. I read a book by an autistic young man (Birger Sellin) who learned to use his computer in order to communicate with the world. He describes himself as incredibly lonely and trapped in his body because he can not take part in other peoples activities as he would wish to. Having this comment in mind I would strongly opt for a cure. I hope you don't mind me saying this.

Amelia said...

any 'cure' for me would be a reduction in frustration for both my son and for myself because of the lack of understanding for each of us, as to how the other one operates, and the 'waring' elements of caring for an ASD that makes it so tiring.

Thanks for your comment on my blog and thanks for sharing.

Amelia.x

Lindsey said...

Our family life has adjusted to meet the needs of my son...low key holidays, we bought a little cabin for vacations because he couldn't take traveling and staying in hotels, his clothes are bought without tags, his food preferences are kept in the refrigerator, we do not go out socially as a family and our schedule is very strict. LIfe is completely normal as we see it, and so is our son. It is only when the rest of the world intrudes that our normalcy is invaded.
Lindsey Petersen
http://5kidswdisabilities.wordpress.com

Amber DBTD said...

Casdok, thank you once again for a beautiful post.

As far as wanting or not wanting a cure... I don't like to think of it that way. I don't think about Jaymes in terms of needing a cure. i think about him as my child, who is different, but who does function in society, in his own way. I love him for who he is, and regardless of whether a cure becomes available (a non BS chelation/vitamin/ionic footbath cure) I will love him and continue to help him in every way to live a relatively normal life.

The parents who obsess over how horrible autism is, and how they need a cure desperately are the most angry, bitter people I've encountered. How can you enjoy your child if all you think when you look at them is "this needs fixing?"

If one day it can be cured, that is the day we as parents will look at where our kids are functioning at that time, and weigh our options very carefully. Until that cure comes, I prefer to enjoy my son for who he is, rather than mourning who he could have been.

And Casdok, I wanted to share this link with you- C and a few other blogger's kiddos inspired this. Keep doing what you're doing.

http://www.youtube.com/user/dontbitethedog#p/a/u/1/FsrHs3GFi9g

Amber DBTD said...

Oh, and in response to anonymous who referred to C as a pet, and basically said that his life is worthless- What is the point of this?

Regardless of whether any of the things anonymous spouted are true (IMHO, he or she is batshit insane), C is here. What point do these comments serve? What would you like Cas to do? Euthanasia is hardly an option. For god's sake, you are reaming her for commenting on her reluctance to give a HYPOTHETICAL cure. It doesn't even exist. At least get angry over something real.

BEE said...

so your saying if somone gave you a pill to take away the sypmpotms of autism your child is having you wouldnt take the pill

that i dont get
its not like we arent accepting our children
but if we cna help some symptoms as a good mother you help the symptoms
if they had a cold you treat a cold

this post made no sense to me sorry

i treat my sons symptoms and he isnt cured but he is doing better
he still him if he is flapping around or cna speak to me
i accept him and i dont feel aneed to cure him but he was sick so you treat him for that you dont just let it go an d accept certain things

BEE said...

THANKS FOR THE NICE COMMENT

i wasnt trying to be mean on my last comment

i was actually trying to ask a question in way and my question was i didnt really unserstand your post at all

would you help treat symptoms or are you saying leave the child how they are ???????

i believe in acceptance but i guess i also believe to look for treatments for certain symptoms
and sometime sthey dont work and sometiems they do
i really do wish you and your child the best of luck
i know how hard it can be sometimes

Casdok said...

I tried to say in my post i have helped my son in many and various ways over the years, as acceptance is not about doing nothing. But as he is not separate from his autism, nor is autism like an illness, i don’t see it as treating symptoms, but just helping him cope in this world as best he can.
Hope that explains a bit better??

Anonymous said...

Hi
Very nice and intrestingss story.