Amanda Baggs on CNN tonight
February 21, 2007 by Kristina Chew, PhD
Filed under Health
Dr. Sanjay Gupta, Chief Medical Correspondent for CNN recently met Amanda Baggs who blogs at Ballastexistenz and is an important and powerful voice in the autism world. Writes Dr. Gupta in his Paging Dr. Gupta blog on February 20th:
While she could read Homer, she also wanted to rub the papers across her face and smell the ink. Is she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.
It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.
Baggs’s writing on Ballastexistenz and her comments and questioning of my own writing about autism has helped me to try and to think harder. Baggs asks hard questions that call for thoughtful responses, as a recent exchange among her, another autism mother, and myself on Autismland shows. Baggs asked me why I had spelled my son Charlie’s pronunciation of “Mom” as “Mahm”; she wrote:
“I had a lot of articulation problems growing up. I would not have liked it if someone had spelled everything I said phonetically because other people thought it was cute or personal.”
Another comment from Baggs has been making me think very carefully about how I represent Charlie in my writing:
“I do not see you describe other people in your life from as far outside as you describe Charlie.”
Indeed: I have to wonder how I write about, for instance, my husband Jim with whom I talk constantly, with whom I use language constantly, and about Charlie who has minimal speech but certainly a lot to say.
I have read more than a few critiques of Amanda Baggs to the effect of “not all autistics are like her,” just as not all autistics are like Temple Grandin, or Tito Mukohopadhay, or Charlie, or our children with their highly individualized needs. But there is some commonality in the way Baggs describes her interface with the world; she uses words via her blog, and Charlie (so far) uses something else. Baggs asks hard questions of her readers and of the world—-precisely the kind of questions that I think are the most important ones a good teacher can ask.
Amanda Baggs will appear tonight at 10pm EST on Anderson Cooper 360.
And I SAY THIS …… Autism is not a friend,It comes to my family like thief in the night years after my boys were born , Changing my hopes and dreams for them for ever.To say its a friend of my family would be the furthers thing from the truth.I love my boys and as long as there is air in my lungs I will fight this and search for a way to remove it from our lives for ever!
Thanks
Stacy Goodson
http://www.MySpace.com/mrboxing
Stacy, I think that is the most important thing all of us feel—deep love for our children and great hope for their lives and futures.
For sure !
But
Find the cure !
Stacy Goodson
http://www.MySpace.com/MrBoxing
I think we need a cure for ignorance way before we need a cure for autism.
NO ONE autistic has EVER raised their hand when I’ve asked who in the room is broken. I get lots of neurotypical takers who think they’re broken.
Cure ignorance and hatred and repetitive hate messages on blogs. Don’t cure me. Cure people who spend time blogging on myspace about how their kid is toxic and use tired changeling rhetoric they stole from CAN about their kid (so which is he? toxic or a changeling? I’ve been accused of being a changeling by my family. The bath in holy water didn’t cure me. Neither did the anointing with oil, for those keeping score). Cure people who throw horrible words about autistic people around
then say autism is seperate from us
when we know it isn’t.
Find THAT cure.
We don’t need one. But they sure do.
I have two sons on the spectrum. When I first found out they were Autistic I was broken hearted. I knew nothing on the subject and had a professional telling me they had no chances without this or that and there is no cure so on. That was the scariest thing to hear in my life. Yet at that time I knew nothing just the word Autism. I got very depressed and felt very sorry for myself and them. I was embarassed to face public.
I started researching on the internet and buying every book possible. I got obessed with it and it still to this day consumes my life. I love reading about it and I am learning more and more and over the past year I have became so proud of my sons. I realized that I was not helping them trying to change things I could not change. Before I knew it they took off. It took me learning more and more. Everyone fears the unknown. I have always been very opened minded and that certainly helped. I dont want a cure for my sons. I would have two completely different kids. In some way Autism has became a blessing for my family and I embrace it. I understand it has some challenges but what parent doesnt face that?
I try everyday to show my sons how much they mean to me and they are perfect just the way they are. They are very bright affectionate and so full of life. They have taught me so much more to life. I certainly am not the same person. They have made me a better person and a stronger person. I still have these so called professionals telling me they cant do this and that or may never. My additude is you just watch them. They had already proven them to be wrong in so many ways.
They have emotions just as any kid and they need to know that a parent believes in them and is very proud of them. No kid wants to be thought of as not making it without some miracle cure unless thier life is threaten. I were certainly perfer Autistic kids than for them to have cancer and I am thankful. It disturbs me that alot of times its compared to life threatening illness. Like it took thier kids away. My kids are still here and if I can turn back time and have so called normal children. I would and could not dream of having different children. They are perfect just the way they are and always seem to manage to put an happy tear in my eye. I am so proud. Far from being some monster.
Its not the kids who need a change. I made my changes I am the adult I am the mother. It is my job to make them feel special and make them understand people will be ignorant but to keep going and not let anyone stop them.
I appreciate all the adults on the spectrum. Cause it was the help of them. I started to research on adults on the spectrum when something in my gut told me to. Come to find out after having a long heart to heart with my father and putting together alot of pieces together over the years my brother and I might be on the spectrum as well. I always felt something different about myself and all thanks to my sons and researching other adults on the spectrum I now know what makes me different. It is just I never heard the word Autism untill my sons were diagnosed. My brother and I lined up our toys both had speech delays both have social problems and so on but back then things were different. I am very happy to know what was going on all this time and I am very comforable about it. I just wish I knew something sooner so I didnt drag my sons through hard times back then and would had been able to be a better mother to them then. I too was ignorant about it. Not as bad as some but I was. I never went as far as calling it a monster.
Sorry I had so much to say and typed away. My only point is I dont want pity for having two kids on the spectrum I only want people to see what I see in them everyday and stop treating them as if they damaged. They are very happy bright fun loving kids.
One more thing I am sorry to anyone else on the spectrum who has to deal with such ignorance. I havent had an official diagnoses yet for myself but looking into it and very excited to know. I wish everyone the best and if we can make just one person see that being different is not being broken then it is making some progress. Just sorry to see some like to fight with the real professions on the subject (Autistics themselves)who are indeed the real experts and from what I see you handle it in a very mature way. Its also very sad that a parent of an Autistic child will not listen to Autistic adults. After all Autitics are the real experts. Thanks for taking time to read……..Crystal
Crystal,
This was a beautiful post!
Thank you I could type forever on this subject. It is my world. Besides I was sad to see some of the post here. I seen some people have some growing up to do and fast. Before it damages thier kids self esteem. Self esteem plays a major role in an Autistic person just as anyone else. Thats the problem people forget about thier emotions. Just cause they sometimes do not communicate they forget the kids do understand. It would certainly hurt my feelings having someone talk about me in those way even if I couldnt communicate that it hurt.
Like that Autism everyday video and the mother talking about how she wanted to drive herself and her Autistic daughter off a bridge. The reason she did not was for her other child who was not on the spectrum. What made matters worse was her daughter was right in the room. I call that emotional abuse. They teach you when you are divorcing not to talk bad about the childs other parent because it can really hurt a kid. I dont see how talking negative about a child having Autism is any different. That angers me to see parents act this way and especially right in front of the children.
I got so much hate mail for expressing my anger towards that mothers comment on my myspace. I know I went through struggles but never did I want to end the lives of my sons. I gave them life and you know what they gave me a life. I owe them my life before them my life was meaningless.
Anyway I just hope to see parents like this change before its too late and do some serious hurt to thier childs feelings or maybe even leave an emotional scar. Those are the worst scars they never heal as easily.
Thanks for all your kind words……Crystal
“Its not the kids who need a change. I made my changes I am the adult I am the mother.”
Crystal, I can’t thank you enough for these words—-they sum up so much. And I also can’t think you enough for your comments which say so much; say what needs to be said: Thank you.
Warmest wishes to your family from Kristina Chew
Sorry that the subject was thrown off. Anyway we have NTs with all sorts of different iqs just as we have Autistics with all sorts of iqs. We have NTs who dont always have the skills to live independantly just as there are some Autistics. The differance is the two minds think and learn differently. I personally feel unique minds make the world a better place. There is alot of things around that Both NTs and Autistics use everyday of thier life that some very bright Autistic mind came up with. Just like there are things around NTs have created that certainly helped change things. Truth is Nts and Autistics need eachother without one our world may not function as nicely. I would bet every dime I have right now if it werent for Autistics we would not have these nice things called computers to be put to use. There is alot of great art and music in this world because of brillant Autistic minds. In so many ways both types are the same but yet unique enough to make it work. It is just no one takes the time to look at past the negative to see some of the great things about it. There are so many adults of the spectrum making a difference in the world today and in history there were some who changed things. We are blessed to have had people like….
Albert Einstein most people did not think of him as smart when he was little. They thought he was hopeless. He did poorly in school and he was a late talker. Boy did he prove the world wrongly.
Isaac Newton who was believed to create a math we know today as calculus. He was also one of the greatest scientist who ever lived.
Thomas Edison was an inventor. This man gave us a light bulb and batteries. Wow lol I would like to see NTs live without those for awhile.
Well anyway there are so many of them. I can proudly say that I have two sons who think in ways these great men had.
Don’t worry set back and take it easy guys!
But me and many others are fighting for your children to have a choice to live a normal
life of enjoying EVERYTHING life has to offer were
they don’t have to depend on others from now on.
It’s sad that you have to make this choice for
your kids.Because mine are my everything and
I will never give up on them ,EVER!!!!
http://slugout.com/posters/RR3-small.jpg
I am sorry to hear your kids dont have EVERYTHING life has to offer that is so sad. WOW I am lucky cause mine do. I am sorry you want a normal life for your children. That is really sad too. I am lucky again cause mine do. But then again it seems you and I dont agree on whats normal. Oh well alot of people dont really know how to describe a normal life. Its really sad they are not enjoying everything life has to offer. Once again my kids are full of smiles giggles and laughter.
Now the depending on others thing I am kinda blown away. See I didnt know that kids were born and was self dependant. I always thought they were born and ALL kids took many years to learn how to depend only on themselves.
It is kinda sad that my kids are so full of giggles laughter smiles and affection it is kinda sad they had to depend on me from the day they were born to cook clean teach them and guide them. Heck I thought thats what parents do with any child. And it is so sad that they have so many goodthings life has to offer. Such as a life and they are not dying from some illness.
My goodness where did I go wrong? Ahh I know what it is. I stand beside them instead of in front of them. I defend them against those who say they wont amount to anything cause they are disable. I also say they are not disabled they are just behind and need some patience and alittle help. I also take the time to get into thier heads and learn about what they like and get interested in things they like. They reward me by wanting to know whats in my own head and wanting to learn more about it. Geezz I have been so wrong.
I dont need your fight. There are so many kids dying who need you fight. My kids are healthy strong and pretty much happy with life. At least fight for thier right to be understood or accepted.
One thing I will have to say I am doing right since I am so wrong for my mothering is I accept them and believe they can make it without wiping the Autism that is apart of them away. So that will be good when they are teenagers and have somewhat of a self esteem. At least them I dont have to worry about teen suicide as much because my kids will feel accepted from someone. In case you dont know kids grow into teenagers and thats a very hard time in life to feel broken and not accepted and the main reason for teen suicide is feeling worthless and not accepted. It wont be my sons and I hope some of these parents realize that before it is too far gone. Noone wants to feel worthless of a disappointment especially to thier parents.
Just to let you know. I am not fighting with you. I am just trying to show a point in hopes that you will see. I am also defending my own children in a world that people do not accept them for being different. I just hope someday people will see the beauty in thier unique ways and how creative they are. They are no different from anyother kid. They just require more love understanding patience and dedication. They really do blossom when you come to terms and accept them. Instead of trying to change them just try showing you they dont need to change to make you happy all they need to do is do the best they can.
Stacy, I prefer not to use language like “fighting” in regard to our day to day existence with autism—-rather, it is process of growing, and learning, for everyone.
I can really care less about your smart a*s reply’s.You know I am not wanting to be apart of having your Gov checks takin away , No I am just trying to help in the fight with the mom’s and Dad’s that want there kids to be able to play sports in school be homecoming Queen or the star QTR back , Or maybe a doctor or a lawyer . What ever they want to grow up and be , And I promise you this! If this Amanda was given the option to get out of her wheel chair and live the life that we all take for granted , she would ! I am happy she has learned to cope with the cards she has been given ,But I wanna be apart of something that
will give people the choice to live
another way !Because my boys are my everthing.
And sure it would be easy just to set and
draw a check and let them stay 3 years old
forever . But the problem is I am not gonna
live for ever.And I wanna make sure when I am
gone they are living the best life they can !
There is a cure but we have to look for it!
Stacy Goodson
http://www.MySpace.com/MrBoxing
Ok, I’ll bite…. what does autism have to do with keeping kids from participating in sports in (or out of) school?
You are very ignorant if you think Autistics can not play sports or have a career in life. Ever thought that maybe that is not thier thing to do?You are also very ignorant to assume people collect Government checks because they think differently than you do and even if they did how does that make you better considering you yourself barely get by? By the way I am not assuming you make very little I actually looked at your myspace and seen. Boy you got alot to learn. Also speak for yourself when you say take things for granted cause you have no clue on what I had been through and what I accomplished. One more thing thanks for the compliment about being a smart a** I take pride in being a smart educated person. Not that I am a genius but you obvisously know what I mean.
One more thing say what you want cause I have no more responses to you. The best way to handle people like yourself is to ignore. We know how much you would hate that. So that is just what I am going to do from here on out. I was hoping maybe you might see my point but you are to blind to see past yourself.
Oh shit.
I can’t play sports because Im autistic?
Someone needs to tell my gymnastics coach. And retroactively remove everything I did in basketball, volleyball, soccer, diving, and 6 years of power tumbling.
Someone probably needs to unteach my old students how to tumble, too…
lol Now that was great. Just like the Jay Mac kid did not get famous cause he was poor at basketball. lol oh my I better give up college while you give that up cause you know Autistics have no chance on careers either. After all our families all have to live on government checks. Since we cant depend on ourselves.
I think he just feeds off arguing and he will be back to say some more ignorant stuff. At least untill he is ignored for it. People hate arguing when no one argues back. Besides there is no helping the guy so I give up.
Yeah, Kassiane, you were the one who *sprung* to mind right after Alex. BTW, did I ever share this with you?
Well my youngest son is 4 he has all the theropy
in the world. Plus I feel I have NOT slept a day since this has all happen .He still acts like he is about 18th mnths old,, some times he is happy , some times he will cry for hours.I cant ask him whats wrong ,because he cant speak, So some times I just cry with him. So let me say this as nice as I posibly can , ALL OF YOU CAN BURN IN THE PIT OF HELL IF YOU THINK I WILL EVER STOP LOOKING FOR A CURE !
And I am sorry I posted here on this no hope forum!But if you realy want me gone Shut Up about
me !!!! And simply I will be gone !Just like that!
Thanks
Stacy Goodson
http://www.MySpace.com/MrBoxing
Ok with that said. I am sorry I never introduced myself I actually checked a bullentin on myspace that was a link to here. Thats how I ended up here. I wanted to introduce myself first but my mind got clouded with other thoughts of what I wanted to say. Anyway my name is Crystal. I have 2 sons on the spectrum ages 4 and my oldest will be 7 in april. I am in the middle of getting a diagnoses myself and my soon to be husband is on the Aspergers spectrum. Yea so everyone in my house is on the spectrum. At least that we know. I have yet to seek out mine.
I apolize to anyone I may had ticked off by not getting to know you before leaving my thoughts on the subject that was being talked about. I am also sorry that it has NOTHING to do with the original topic but I seen what was going on and had to say what I felt. I meant no harm to the people who are regulars here. In fact I admire you all from what I had seen. I hope you didnt mind me speaking up my thoughts to the issues I felt I wanted to speak up on.
Thanks to those who said such sweet things.
Witness and Hope could be a subtitle for this weblog–it was the name of the Oct. 27, 2006, conference on Autism and Advocacy held at Fordham University and organized by my husband, Jim Fisher.
Charlie is a great athlete—ocean swimmner and 10-miles plus bike rides. And a great walker in the city and all over.
Although my son Brendan has little interest in team sports, he’s also a good swimmer & is becoming a great sailor. We started taking him out in the boat when he was 3, after 18 months of swimming lessons (& always with a life jacket!), & he’s sailed for fun every summer since. This past summer, at the age of 10, he crewed his first race with his dad & they won, beating 40 other boats… I see him as on the road to being a life-long athlete.
It’s nice to meet you, Crystal. I’m pretty new here, too. I have a six year old son who was diagnosed as moderate autism last May, and I found my way to this blog, actually, from a link on Kassaine’s blog while reading around.
I appreciate your comments earlier in the blog.
Welcome aboard…
Thank you Rochelle it is also nice to meet you as well.
Kristina – I just wanted to tell you that I agree with whoever said each autistic is different, and what they might like or not is as individual as they are.
Bug has told me that he doesn’t mind my putting his photos on the internet, as long as he’s not “doing something dumb.” That’s a 14 yo for ya.
That said – Gang, Please Don’t Feed The Trolls….!
Wow Jypsy, all the autistic athletes and I bounced into your head after Alex? That’s an honor (especially since there’s no way I could keep up with him!)
Lots of autistic people do things we “will never do”, every day. Ugh. My gymnastics coach used to be a special ed teacher and she laughed herself stupid when I told her autistic people can’t do gymnastics-a piece of wisdom my old coach picked up from another coach at a meet. And there’s a little Aspie kid on my team, she’s about 7 or so.
There are more runners and swimmers than gymnasts and such, I think. Gym is a weird sport….but it’s OT for cheap!
Kassiane, I wish you were around to coach my Aspie son. Soccer has always been his sport though he played every school sport, was a good wrestler and even won Male Athlete of the Year when he graduated from Jr. High. We’ve had a trampoline since he was 5 and a couple of years ago he discovered “freerunning”. Now he does “street gymnastics” and wishes there was a place he could go with mats etc and people in the know to learn and practice. The local “Gymnastic Academy” is not very open to it….. At this very moment he’s out downhill skiing. Of course he can’t just go downhill….. there has to be a jump or a spin or …….
well of COURSE there needs to be a jump or a spin…I’m the same way on my snowboard. Scared the beejeebies out of an instructor, go down the hill my first time, then hit the pipe and do a flip within 10 minutes. “what, I’m a gymnast and wearing a helmet!”
Our gym used to have an open hour every saturday for the local kids who were into freerunning, they could do wallflips and gainers and stuff with spotters and landing mats. Then they stopped coming because of school. It’s too bad more gyms AREN’T open to it because it’s a big market and it gets boys into the gym…a couple guys on Men’s Team also do the street stuff, they do some in warmups and at the end, and do the “serious gymnastics” in the middle. But we’d have never gotten them on rings and high bar if the coaches hadn’t said “yes, we’ll teach you (whatever)”.
jypsy. one word.
Moe Norman. Oooops, that’s two words.
As it happens, Charlie has been doing gymnastics in PE for the past few weeks at school and excelling—- yes, we’ll get him out on the links sooner than soon.
>>>Janna’s Thoughts… » Functioning in the ‘now’. – …a place to capture the otherworldliness of thought. Says:
March 3rd, 2007 at 12:48 am
[…] What I find most interesting are the people who, like Stacy over at Autism Vox, continue to say that we are giving up, that we are not about hope, that we don’t want anything to be done about autism. […]
>>>Janna’s Thoughts… » Functioning in the ‘now’. – …a place to capture the otherworldliness of thought. Says:
March 3rd, 2007 at 12:48 am
What I find most interesting are the people who, like Stacy over at Autism Vox, continue to say that we are giving up, that we are not about hope, that we don’t want anything to be done about autism.
My Reply : Ok , Like before I came here by mistake
for that I am sorry , I for sure don’t want to be apart of a group that is not searching for a cure
for Autism.And to the person that was saying I am a troll , Give me a break , I dont wanna be apart
of your no hope group , but if you want me gone
just dont talk about me because this troll is always gonna defend himself and his family !We will find a cure and you can stay in the dark as long as you want.
Stacy Goodson
http://www.MySpace.com
Stacy, thank you for being a part of the conversation.
Ah, yes… “cousin” Moe
And yes, I am a hopeless optimist. My (e)mail box is full of hundreds of letters from people thanking me for giving them hope over the dozen or so years my site exisisted.
“No hope”? No way!
The hope comes from us knowing there will
be a day when Autism is out of our childrens life forever! Soon real soon !
Sarah
MY hope comes from knowing the ISNT is hard at work…
ok ???
You certainly do not speak for this mother of two on the spectrum. Also a soon to wife of an Aspie not to forget both my brother and I are also on the spectrum. Oh wow Autistic people are capable of growing up to have lives like NTs (if they choose) some perfer being alone and I certainly understand. MY hope is for MY sons is for them to grow up reaching thier potential in life. Being the best Autistic men they can be. I do not wish to change a thing about thier unique ways. MY MAIN hope is for people like you to someday accept them for all thier unique ways and understand that just because someone is on the spectrum does not mean it is a tragedy. The only tragedy I see with Autism is ignorance.