"Neurodiversity" Autism Awareness | Autism PDD
Donny's Mom, I thought what you said was perfect. There does have
to be a balance, & I thought you spoke of it so eloquently.
Wow...I think you may have opened up a can of worms here! 
I like to stay non-confrontational...but will say I love TAAP & what Estee is
doing w/ this project. I love reading the personal stories & seeing the
amazing art from the autism community. Great stuff, IMO. For me, I feel
the first thing that needs to be done is to push for acceptance of our
children (& all who have autism) and to be make sure they have
opportunities as they become adults (& to create opportunities for adults
NOW). I have more to say on this, but again, I like to stay away from
controversy.Craig,
Thanks for your blog, and your support of both sides of this issue.
Personally, while I respect the right of the ND community to advocate for
themselves, I find it unacceptable that they advocate for ALL autistics.
For parents of more severely affected children, the ND arguement is hard
to subscribe to. When you have a child who is aggressive, self-injurious,
and socially isolated by his disability, who cannot access the community
and services because of his disability, well, it becomes much harder to
"live and let live" per se. I don't want to "cure" my son. I do want to help
him reach his maximum potential, and to give him the skills to lead a
happy life, with meaningful day to day activities and relationships.
I believe in celebrating and accepting neurodiversity, I feel very privileged
to have Sharlet in my life. I think a lot of media is too negative about
autism and can be one sided. I always portray autism only positively
when making videos and such for the world to see, just to put some more
balance on the positive side. I do however believe that autistic children
need extra help to learn skills. I am anti invasive therapies, I believe in
play based therapies and loving interaction. However I do not judge other
parents and still want to form online (or real) "relationships" with all
parents and autistic people no matter what therapies they have chosen.
I have no interest in making Sharlet "normal" and I let her develop rituals,
routines, stimms etc naturally because I believe it to be her right to have
her natural mannerisms like anyone else. What I do work on is social
interaction (because I know she wants to play with kids but doesn't know
how) communication (because I know she wants to be able to) and
strategies to decrease her anxiety (because I also have anxiety disorder
and I know her life will be easier with less anxiety)
Well I think that covers some of my thoughts, and as I often say, I know
this is just my own opinion and everyone is entitled to theirs. I don't
pretend to know what is right for other peoples kids.
Aye, I fret so much that I'm inadvertently trying to make Ds1 more "normal". But I'm not fussed about him communicating through verbal speech, just whatever he feels comfortable with. I suppose a better explanation would be "I'd like to find a way of helping him communicate that others can understand". I know when he presses his forehead against me that he's kissing, when he says "Oh no, we gotta go through it" or "never mind, the balloon would never carry Mr Spoon to Button Moon" that he's telling me he's upset over something. But I would like hi mto be able to tell people when he's hurt, or he's hungry, or when he wants to buy something and whether that's through signs, or words, or drawing, or ready made pictures, or something else, I don't mind. He can keep his routines and his interests and his movements. He can be whoever he wants to be.
I know what it's like to not be able to initiate, not be able to let people know how upset or worried you are about something, or tell them what you need. I know what it's like to be bullied and then finally, after months, snap and cry and when the teacher asks you what's wrong, be unable to say and the teacher doesn't think to just pass you a piece of paper and a pen and ask you to write it down. I know what it's like to be in bad pain for two weeks after the family dog bangs her head against yours and you can't tell anyone. Or to be unable to say you need the toilet and then it's too late (thankfully this wasn't all the time). I know what it's like to be able to talk about the cake my mum is baking, but not tell her I can't eat in the school hall as it's too noisy, so I'm getting detentions for eating in the classroom. I know what it's like to talk about the Pendle Witches, but not be able to tell my parents I need a new PE Kit. And the hardest thing about all of this, is that because I was never given the option of expressing myself via other means than verbal speech, that meant that if I couldn't talk about it, then it didn't get said. And people presumed that me saying nothing meant that all was well.
So yes, finding a compromise about Ds1 communicating in a way others understand might well be seen as moving him closer to being normal. But I don't want him to go through life with an additional set of labels (stupid, shy, stuck up, ignorant, boring), because he can't explain himself in a way others understand.
I think Donny's mom (and many others) have it kind of backwards: Anything only for those closest to the norm has no business calling itself neurodiversity (at least not truthfully). The idea is to totally change the way the community interacts with all kinds of people, and that goes especially for those it is most likely to shut out. Those are the people most in need of acceptance, because they're not necessarily going to earn it by their closeness to 'normality'. And aside from that -- what everybody else said, exactly.An important and thought provoking thread...Thanks!
I do not think that the ND movement advocates a complete hands off approach to the rearing of autistic children. (i.e. - just leave 'em be and let them develop in their own way, without interference). I think that they agree that educationally and/or medically appropriate therapies should be used to allow the child to acquire functional communication and self help skills and such or to relieve that discomfort of co-morbid conditions. Their message is one of acceptance, but they do not, from what I can tell, advocate against providing appropriate therapies for children.
Somebody will correct me if I'm wrong.
I do believe that they advocate against the use of intensive therapies that primarily seek to 'normalize' a child - perhaps, in the process, causing the child to feel that their innate thoughts, feelings, and mannerisms are somehow wrong or unaccetable. It does sometimes seems that they believe that modern ABA programs employ Lovaas style aversives and seek to eliminate benign autistic mannerisms. And, of course, there are certain common autistic behaviors that must be extinguisked for everyone's well being, as Donny's Mom mentions. I'm not sure how the ND community advises parents of self abusive or violent autistic children.
All in all, I think their message of acceptance of neuro-diversity is a good one, and I appreciate the fact that they seek to counteract some of the negative stereotype that is put forth by the cure groups. Personally, I do not want my own children to be percieved in the way that autistic children are often presented by the cure groups - as horrible burdens on their parents and on society - and I do not want my children, when they're older, to feel that they are diseased or poisoned or otherwise flawed, and it will be hard for them to escape that message given the common perceptions of autism in our society.
I also think that their message could be of comfort to parents of newly diagnosed children, who's first media exposure after learning that their child has autism is often 'Autism Everyday'. The terror that some parents feel upon the diagnosis of their children might be out of proportion to the actual disorder in many, though not all, cases, and a resource that presents autism in a less fearsome light to counterbalance the message of despair, is probably a good thing.
But, in truth, I don't know all that much about the movement, so I really don't have much else to say.
I am all about acceptance and loving unconditionally but wouldnt want to be judged for doing intensive ABA for my child because of old beliefs of adversives were used..no ABA therapists uses them to my knowlege. I am sure they wouldnt like me to much if they knew how many hours and years we had Sarah in therapy..not to make her normal but to make her be able to learn. I agree with Donny's mom too..what parent would sit back and do nothing? Not that they are promoting that...I love that autism awareness is happening more and more...lets just hope it teaches acceptance as well as educating the public:)
I'm a strong believer in the ND movement. I want Tom to be able to communicate with me, for his understanding (or for him to be able to show he understands) to improve and for him to be happy.
Out of interest, Jim Sinclair, one of the strongest advocates for Neurodiversity, did not speak until he was 12.
My name is Rob LaPlante, and I am partners with Craig Neilan, who started this thread, at GiveBackAmerica.org.
It is very interesting reading the different responses you all have on this issue. When I first contacted some autistic bloggers to see if they would blog on our site, I thought everyone basically shared the same views on autism, and that everyone would "support the cause". Boy was I wrong. Although I now have formed my own personal views on this, we are very neutral at GiveBackAmerica.org and support both FARR (curing autism) and TAAP (neurodiversity).
I want to thank everyone for helping us understand this concept, and hope everyone supports the charity of their choice through GBA when doing their online shopping.
[QUOTE=littlebopeep]Here is a thread going on the AutismSpeaks forum that includes some contributors on either extreme of the "ND" vs. bio-med controversy.[/QUOTE]I just want to say, these are not opposites. I have been around long enough to watch the so-called "ND" community be framed by people as the opposite of something else. What we're supposedly the opposite of, is always different. Today it's biomed, tomorrow it will be something else, and it's never going to be true.
This not for the faint of heart, so click on the link only if you can handle a gloves-off debate. Here is a thread going on the AutismSpeaks forum that includes some contributors on either extreme of the "ND" vs. bio-med controversy. Most of the posters are "regular folks" but some are extreme. Makes for interesting reading.....
http://www.autismspeaks.org/community/forums/showthread.php? t=741&highlight=truthseeker
Elle wrote "I feel there has
to be a balance of us meeting our children halfway...not forcing them into
our world, but rather us entering their world in hopes of building a
bridge."
YESSSSS!!!!!!
This is EXACTLY how I feel. Ironically, all the NT people I know who I say something similar to look at me like I have 5 heads. I just feel like we have to compromise. If one had a def child, he/she would learn sign language to communicate. If one adopted a child from France, he/she would likely learn French and teach the child English. What I am trying to say is as with all differences, we need to coexist and communicate and relate better by preserving the differences and compromising to get an in-between that will bridge the differences. I am working to help Ali understand the NT world but I am angry that the NT world she encounters often does not work to understand her. If she has to work extra hard to do things amongst NT's for thier comfort, they should work equally to comfort and accomodate her. I am not sure I am wording this right but I just think everyone needs to find a common ground, try to be more understanding and everyone needs to help eachother, leaving behind judgement and being open to differences.
Bravo Anna!! I agree 100%!
And, thank you to everyone for your positive comments. I woke up this
morning feeling "uh-oh...I may never be able to go back on that forum!"
LOL! Kind of like Jerry Maguire after his manifesto.
Fred--Defenitely, for some reason, this forum rarely has those biomedical
postings. I wondered about that too--I found one board that was primarily
based around this, & then I came upon this one. Surely felt more at home
here, so thankful this board exists!! Interesting, to ponder what the stats
are as far as parents & biomedical treatment. Perhaps it is 50-50? I have no
clue.I think people often read "bad mother" or "bad parent" in where it doesn't exist. I've recently got a lot of flack for "calling someone a bad parent" when I did absolutely nothing of the sort, and I've seen that happen over and over as well. It appears that it's nearly impossible to say that something may not be the best way to go about something, without someone else converting it into something very black and white ("you're saying I shouldn't help my child" "you're saying I'm a bad parent/bad person/etc" "you're saying I should let my child do whatever he wants" etc). Not that this is limited to the autistic community, but it does seem to make discussion nearly impossible (because the entire discussion then goes to reassuring the person that they're not a bad person and saying everything that wasn't said instead of a discussion of what was said).
I met a guy in person recently who characterized an entire diverse set of opinions by autistic people as "autism is wonderful rah rah" (a category he placed me in until he actually met me, and apparently places all "ND" people in until proven otherwise, which is ridiculous).
I know YOU'RE not saying I'm a bad parent GTTO, but I will doubt myself every now and then
Hi Donny's mom - I've never heard anyone in the ND set say anything like this. Put your mind at ease. I agree with littlebobeep, the ND movement wants ACCEPTANCE. I'm
sorry but a year or so ago whenever I first watched the Autism Speaks
short movie, at first I remember seeing those kids going "OMG, that's my
dd" but then when that mother spoke of driving off a bridge w/ her
dd...WOAH, I was SO put off by it. Certainly if I were someone w/ autism,
I'd be even more offended. Can you imagine if on a St. Jude's telethon, a
mother came out & said "yeah, I thought of killing my kid w/ cancer & I,
but then remembered I had a healthy kid at home, so I didn't." The world
would be floored...yet because this little girl had autism, it was okay to
say such a thing? My aversion to those views & a lot on the side of CAN
et al grew from that moment. They applauded her 'bravery' for saying
what everyone else thought...BS! I've NEVER thought that and never will.
I've almost lost my dd due to a major infection...any day with autism
beats the hell out of a day without her (or a day w/ her in the PICU for
that matter). What's even more sad is the number of kids who have
autism who have been killed, statements like this on the Autism Speaks
video...to me, makes this thought more acceptable. 
Also, after all this same regurgitated families & video clips from Autism
Speaks, so many people I know see that as autism. A big depressing
horrible life w/ no hope. They see kids who are out of control 24-7. I
could easily make such a film, showing dd only when she is screaming,
thrashing, & stimming. It wouldn't be too hard. BUT, I choose to get
through those times & focus on the fact that she is my dd, I love her, &
love the moments where she may give me a hug or something like that.
Those videos & viewpoints, honestly makes it hard for me sometimes to
come here & vent if my dd is doing something I'm concerned or stressed
about. I never want people to think I am like those mothers. After
watching the Oprah episode on Autism, my neighbor was petrified
that her NT dd may end up autistic and EVEN the baby boy she is
pregnant with...they instill FEAR into the public. What about helping
adults in the community? What about services for young adults? What
will there be for my dd when she turns 18???? I am scared to death of
something happening to my dh & I before we can have the $$ to ensure
dd is set for life.
I am just going to let it all go at this point...lol...but when I hear of these
children taking injections & 30 pills a day, undergoing all this not-yet-
studied procedures & stuff...it kills me. These kids are subjected to a lot
of bad stuff...and yes, kids have died from this. Parents spend $$$$$$
on the hopes that their kid will finally be "normal." Whatever that is...
What happens after years of this stuff, these kids are still autistic? Then
what? What will become of that family, of that child???? My guess is a lot
of confusion & bad self-esteem.
I say therapy & methods to help our children communicate, sensory
integration, improve motor skills, that stuff is all great, & from what I've
come across, is not frowned upon by the ND movement. I feel there has
to be a balance of us meeting our children halfway...not forcing them into
our world, but rather us entering their world in hopes of building a
bridge. This is not live & let live...I have changed how I parent, how I
communicate w/ my dd, our lifestyle, all to work around dd's needs. Our
life has changed A LOT, and we have bad days, we have tiring weeks...but
I really wouldn't do it any other way.
One last thing...yes, dd is dx'd as mild to mod autism BUT she does
have many other medical conditions that our docs said essentially give
her the mod-severe label. She is not "high-functiong". She has a gtube,
seizures, oral motor issues & movement disorders, a lot of autonomic
dysfuction, and other health problems. She has spent time in the hospital
& has had a rough time in her 3 short years. So, to say "well, your dd is
mild & therefore you have no clue what I'm dealing with..." I just say walk
a mile in my shoes before you can make that judgement.
Okay, I am done & in no way mean to offend anyone. I've just read some
posts lately & have had this stuff on my mind...needed to finally get it
out. I think, no matter what, no matter all of our varying views...we all
just need to support one another as best we can. We are all on that road
less traveled, & it is SO nice having companions to go to when that path
gest rough. So, please no throwing rocks at me!
"Live and let live" is a fine argument when the socially accepted norm applies to all individuals. And from within that grp (that can be "typically" graphed) come the best/worst/also ran kind of ppl....
When faced with a disbility, there is a NEW accepted norm within this community - but this bandwidth covers person with disabilities ONLY. There comes a new class of best/worst case/mild/medium... in this set! And the 'live and let live PLUS lets progress" becomes the slogan of this grp.
Unfortunately, these ARE two distinct worlds and to bridge the gap is a loft goal not to mention a very compassionate one, but in reality, we all want to somwhere beling to the first set of norms!
Ok so I just took off. sorry! I was actually writing to a friend who philosophized how every flower blooms differently and u can't compare a rose to a daffodil.. This was my attempt at telling her that comparing a child with disabilities is like comparing the blooming of a vegetable with a fruit.. U CAN CONTRAST! I am not saying which one is better.... only reiterating that it IS painfully different!
Bullet, that was very heart felt, and it made me tear up. My son is non verbal. I know he has a hard time, and it really bothers me he can't tell me if he has a headache or if his sister is bothering him, etc. I know everyday is a new opportunity to teach and be positive. Of course some days are far better than others.
I think we all want the same for our kids. Whether we say we support diversity, we have to! Everyone is different, and everyone deserves respect and basic rights. We have to redifine some things, like the right to be heard. This can be written, signed, verbalized, or maybe from a PECS card. Our problem is not knowing everyone's rights, it's expanding our mind about how things can be expressed, how people live, etc.
It should really start with schools. I had a wonderful English teacher who at the beginning of each class, let us wright anything we wanted for five minutes, We could keep it, tear it up, whatever we wanted. It was such a release. We need people who think outside the box.
Fred, if that's how the ND movement works, then I'm in full support. Myexposure to it is pretty limited. Mostly blogs, sites, and video clips of
folks with AS or HFA saying I shouldn't try to stop my son's tantrums,
shouldn't make him go to school (or basically do anything he doesn't
want), should provide any sort of therapy to address his autistic
symptoms (communication, social difficulties, learning difficulties,
anxiety, etc.), because then I'm not accepting him for who he is...
[QUOTE=gtto] I think Donny's mom (and many others) have it kind of
backwards: Anything only for those closest to the norm has no business
calling itself neurodiversity (at least not truthfully). The idea is to totally
change the way the community interacts with all kinds of people,
and that goes especially for those it is most likely to shut out.
Those are the people most in need of acceptance, because they're
not necessarily going to earn it by their closeness to 'normality'. And
aside from that -- what everybody else said, exactly.
[/QUOTE]
gtto, I also believe that society and our communities need to be more
accepting, welcoming, and understanding. I just don't want to be called a
bad mother and person and told I am not accepting my son for who he is
because I don't let him hit me, he has to go to school, and I work with
PECS and other approaches to try and give him communication the world
can understand...
I've no desire to change who my son is - I LOVE who he is. His stims,
interests, and other quirks don't bother me - I actually think most of
them are cute, and expect everyone else to also! I'm incredibly proud of
my boy, and have absolutely no shame over his autism. I just wish it was
easier for him.
I was just watching Finding Nemo with my daughter, and it reminded me a lot of our situation. We all have a child with a 'lucky fin' and sometimes we want to yell you can't swim as well as fish with normal fins so you can't do it!!! In reality, he could and did away from his worried father. He had every right to be that way, but it wasn't how his son could learn and be independant. They each took a journey and found out what they and others were capable of.
We are all going through the journey and my hope is that those of us with kids who seem worse off- my son is non verbal and hasn't passed phase 3 of PECS, has loads of sensory issues I probably don't know the half of, etc etc...don't limit our kids any more than they are with our negative attitude. A lot of us think we're different than the families who just have to deal with Asperger's or the family who's child is getting better by the minute, but I don't think we are. Our kids capibilites may differ, but their potential is there. There are exceptions to every rule, but I can't give up yet!
It is not painfully different unless you look at it that way, and your child will in turn look at themselves that way. Please be positive, and work hard. It is for the kids.
[QUOTE=fred]I do not think that the ND movement advocates a complete hands off approach to the rearing of autistic children. (i.e. - just leave 'em be and let them develop in their own way, without interference). I think that they agree that educationally and/or medically appropriate therapies should be used to allow the child to acquire functional communication and self help skills and such or to relieve that discomfort of co-morbid conditions. Their message is one of acceptance, but they do not, from what I can tell, advocate against providing appropriate therapies for children.
Somebody will correct me if I'm wrong.
I do believe that they advocate against the use of intensive therapies that primarily seek to 'normalize' a child - perhaps, in the process, causing the child to feel that their innate thoughts, feelings, and mannerisms are somehow wrong or unaccetable. It does sometimes seems that they believe that modern ABA programs employ Lovaas style aversives and seek to eliminate benign autistic mannerisms. And, of course, there are certain common autistic behaviors that must be extinguisked for everyone's well being, as Donny's Mom mentions. I'm not sure how the ND community advises parents of self abusive or violent autistic children.
All in all, I think their message of acceptance of neuro-diversity is a good one, and I appreciate the fact that they seek to counteract some of the negative stereotype that is put forth by the cure groups. Personally, I do not want my own children to be percieved in the way that autistic children are often presented by the cure groups - as horrible burdens on their parents and on society - and I do not want my children, when they're older, to feel that they are diseased or poisoned or otherwise flawed, and it will be hard for them to escape that message given the common perceptions of autism in our society.
I also think that their message could be of comfort to parents of newly diagnosed children, who's first media exposure after learning that their child has autism is often 'Autism Everyday'. The terror that some parents feel upon the diagnosis of their children might be out of proportion to the actual disorder in many, though not all, cases, and a resource that presents autism in a less fearsome light to counterbalance the message of despair, is probably a good thing.
But, in truth, I don't know all that much about the movement, so I really don't have much else to say.
[/QUOTE]
Fred, I've been very acquainted with the ND movement for over a year now and I'd say you have it down pretty well, fred.
I consider myself a friend of neurodiversity, but I've also gotten some flack in that camp for RDI, so .... on with the controversy!!! A good, spirited discussion is always worthwhile.
Elle22,
All I have to say is AMEN to all of that!!!! That is how I feel too. My son is so precious, and I'm glad for all the changes I've made too.
[QUOTE=Elle22]I agree with littlebobeep, the ND movement wants ACCEPTANCE. I'm
sorry but a year or so ago whenever I first watched the Autism Speaks
short movie, at first I remember seeing those kids going "OMG, that's my
dd" but then when that mother spoke of driving off a bridge w/ her
dd...WOAH, I was SO put off by it. Certainly if I were someone w/ autism,
I'd be even more offended. Can you imagine if on a St. Jude's telethon, a
mother came out & said "yeah, I thought of killing my kid w/ cancer & I,
but then remembered I had a healthy kid at home, so I didn't." The world
would be floored...yet because this little girl had autism, it was okay to
say such a thing? My aversion to those views & a lot on the side of CAN
et al grew from that moment. They applauded her 'bravery' for saying
what everyone else thought...BS! I've NEVER thought that and never will.
I've almost lost my dd due to a major infection...any day with autism
beats the hell out of a day without her (or a day w/ her in the PICU for
that matter). What's even more sad is the number of kids who have
autism who have been killed, statements like this on the Autism Speaks
video...to me, makes this thought more acceptable.
You'll get no stones from me, Elle! That's pretty much my thinking, as well.
You know what's odd - I've had the impression (from this board, mostly, which was the first one I found when the girls were diagnosed and I just stayed here) that doing these experimental bio-medical things wasn't actually that common. I mean, look at the discussions on biomed and the forums on biomed - not too much content. There're a few regulars that do it, but not many, and not many discussions.
I checked out another board the other night (and some of the posters who post here post there, too - you prolific posters!), and their biomedical forum was the busiest on the whole sight - twice as busy as it's equivalent to this 'parents' forum.
It appears that outside this board, everyone's doing biomed. I wonder why we don't have much of that here and I wonder which is closer to the truth - not many are doing it (like it would appear by perusing this board) or that everyone's doing it (like it appears looking at the other board).
Kind of off topic, but what the heck.
I agree completely with everything you said. It could have been written by
me. My daughters label is the only thing that is different.
So no rocks from me either
fred-
I was referred to this board by an adult with autism because it doesn't have an emphasis on biomedical/drugs etc...
I love everyone on here because no matter your background or beliefs, there seems to be a common sense approach to autism. That is how I like it, and I have learned a lot from here while not feeling like a bad parent for trying to make my kid as NT as possible by doing who knows what to his little body. There is something a lot of people don't have, and that is patience. 2-3 year olds are difficult enough, but add a communication deficeit, sensory issues, and who knows what else-it can be hell. Now that my son is getting older, I realize he is maturing and there still will be times of hardship (the testostereone surge scared me!!), I know if I find a sensible solution, it will pass. Thanks to everyone for their knowledge, and I hope most will still be here in the future!
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