Ceily:
Everybody is a critic. Right or wrong your intentions is to help your child. That is right Tinkerbell, her intentions for her child is more intense than anyone elses in the world!

I can not say I am proud of one incident between my and my son.

He was six, and instead of improving with his speech it was becoming worse. I think it had gone for weeks and weeks and I had not heard him utter a word.

I turned to him one day and said can you talk or not? A dog or an animal cannot talk? Are you a dog?

His eyes welded up in tears and he struggled to speak. His little lips trembled in hurt feelings, but he spoke a complet sentence.

"I am not a dog!"

Bittersweet,
Bitter that I hurt his feelings, but sweet that if I could upset him enough, make him mad, hurt his feelings he could talk.

I hate that I said it, I hate that I did it. But after that he did seem to make an effort to talk, and he talks today.

WE, should not have had to go through that!Bless his heart, every time I think of that I have to go and hug him.

I have got to go right now and hug him.
Damn the medical profession that made the damn shot, damn the doctor that gave it to him, Damn the whole CDC.

Sarahsam, I have no baggage about "further down the road," but your rage indicates that you do. In fact, all that is coming through your posts is rage, so much so that you seem to be unable to see anything valid in any critical comments made here because you are so enraged by the use of the word "neurodiverse."

Now, I never us that term myself, and I don't agree with that particular perspective, but I will defend others' right to use it if they believe it fits.

And when speaking of a child who is OBVIOUSLY not only verbal, but conversational AND is able to engage in pretend play (rather than a severely autistic, non-verbal child), I can understand why someone thinks that the label "neurodiverse" is appropriate for that child.

But this isn't about labels, and that's where you are so caught up in your rage, you're not seeing the forest for the trees.

This is about teaching and learning.

Cecily even says in her post that her "rebuke accomplished nothing, changed nothing, taught nothing." And she's absolutely correct. Because teaching an autistically hard-wired child to translate from Autistic to "neurotypical" takes just as much--or more-- time and patience as teaching any other foreign language and culture. It's not accomplished by ordering a child to behave a certain way and ignoring the validity of his current feelings and needs.

I'm NOT saying that we should be satisfied with watching our children spin, stim, and ignore others. I AM saying that, like many who have posted here, I am seeing something really, really harmful with Cecily's approach as described in her post.

It's very difficult to find a way to point this out while still remaining supportive. I have tried very hard to do so, but probably didn't succeed, and for that, I apologize to Cecily if anything I said seems unsupportive to her.

But as I see it, you and Mr. Maggard are doing exactly the same (destructive) thing. You are each genuinely horrified by what you see, and your response is an attack--a very personal, unnecessarily vicious attack--rather than an intelligent discussion. Your insults are obviously directed at Mr. Maggard rather than the label of "neurodiverse." In the very same post where you insist the opposite, you use the word "cretin." That's directed at people, not at labels. Can YOU grasp the distinction?

The saddest part of all your vicious attacks is that they weaken the whole community of parents of ASD kids, not just the individuals you disagree with or dislike.

Yes, of course I value some perspectives and experiences over others. That's a given for any of us. That's what perspective is all about. For example, I do not value the perspective and experience of a Neo-Nazi white supremacist. That doesn't exactly make me narrow-minded.

Sarahsam, your whole tone is rude, condescending, and downright nasty. Your use of phrases like "Understand?" "GET IT?" is confrontational in the nastiest way, as is the name-calling.

Whatever validity there is to your perspective is utterly lost in the storm of your rage.

sarahsam, it's not a competition to see who is farther down the road than most.

We all have different experiences and perspectives.

No, the original writer did not ask for advice. I am hoping, however, that she(and everyone else reading this page) might be able to find valuable information and points of view in what EVERYONE here has posted (yes, including Mr. Maggard).

We have enough "experts" from mainstream medicine completely dismissing our perspectives. Can we please refrain from the name-calling ("claptrap," "garbage"), even if we don't agree with each other?

Okay, I have to say that I agree that Mr. Maggard's comments were unnecessarily harsh and unsupportive, and the last dig about calming meds was inappropriate and downright nasty.

BUT--I also have to say that I agree with everything else he wrote.

PLEASE, Mr. Maggard--can you possibly find a way to make all those excellent points without being so hurtful?

It also occurred to me that many of us probably have bits and pieces of the autistic way of processing things in our own make-up, and I CERTAINLY include myself.

How many times have we seen an autistic child obsess about someone's behavior not being what they expect--to the point of becoming angry? Ms. Ruttenberg, isn't that what you are doing to your son?

How many times have we seen an autistic kid blurt out the bald, unvarnished truth as he sees it, regardless of whose feelings are hurt as a result? Mr. Maggard, isn't that what you are doing to Ms. Ruttenberg?

Mr. Maggard, maybe you are new to AoA, but this blog provides a forum for parents all along the spectrum and the unique challenges each face parenting our unique children. Sham on you for personally attacking Cecily. Just because her experience isn't as difficult as others, doesn't make the pain she feels trivial. Please keep your harsh words to yourself. A post of apology would be in order.

Wow, I guess the author has some serious issues...

This is just disturbing. You're trying to force your neuro-diverse child into playing the role of a NT. All the while telling us about how embarrassed you are by him?

May daughter is who she is. We work on some things, but I don't force her to pretend to be someone she's not. I have never once been embarrassed for myself when someone gives me a disapproving look, I feel embarrassed for them. They're behaving far more poorly than my daughter.

And in my community, the daycare we took our daughter to was delighted to have her. They saw this as an opportunity to talk to their current students about how you treat (well) people who are different.

Seriously... You have to calm yourself because he was playing by himself?

"forcing myself to look up and smile a goodbye at the other moms. I feel the anger start to rise again into my face. And so I restart my internal pep talk."

The other Mom's in your school don't know about your son? My biggest issue getting my child out of school is being drowned in moms and kids all saying goodbye to Ronnie even though she doesn't look up at them or say anything back.

For a child on the spectrum, it sounds like yours is in good shape. Maybe you should can the rage and save it for parents who arrive at school pickup to find their child still screaming in the calm room, or arrive at school to find that their little girl has decided to go naked today. Mine is 8, and I wish she would even answer me what she thinks she's doing.

Once you're done "feeling the anger" rise up, why don't you take a step back and think about what other parents are going through and what your child is going through. It sure makes a small thing like "being embarrassed" because your child is playing peacefully by himself seem awfully stupid.

Your son's fine. You're the one that has a problem. May I suggest GABA and Isonitol? They're calming.

Cecily - Thank you so much for sharing. You are very brave to face "us" and to share your frustrations and your course of action. "We" are as diverse as our children (and as opinionated). Our experiences, biases, biomed, non-biomed, what colour of ABA we chose (or not), etc., etc. You are VERY brave to face this crowd.

I too am with you and brace myself when picking my son up from school. A different fear: my son (very HF 7 year old) actually loves to play tag games, etc. with other kids... BUT, he doesn't always understand the rules in the ever evolving game of extreme joint attention (e.g., thinks that they are all pushing him, confused when the rules change, etc.) and can suddenly erupt with extreme anger/tears. He appears to be at a "1" the first minute and suddenly he's at a "5". Where really, he was at a "4" and no one knew it but him. This really is an extreme sport for him - and I am so proud of him for even trying - but am ever fearful of his inappropriate tears of frustration (inappropriate to all the other NT moms & kids out there).

And, I'm going to pre-empt you all out there... yes... we've read the "Incredible 5-Point Scale: Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses" by Kari Dunn Buron.

Someone suggested this to us when we joked he "goes to Eleven" - like Nigel Tufnel from "Spinal Tap"
http://en.wikipedia.org/wiki/Up_to_eleven

Anyway, Cecily, thank you for sharing.

Wow, such wonderful replies- such terrific ideas. Taximom I love some of your approaches.I very much agree with the writer who suggested that if a negative situation is repeating itself time after time, one needs to look for a different approach or some kind of change. We need more topics like this and perhaps one day a book to help parents. One thing I am sure of is this- many of you are one day going to see your children evolve into being more sociable. It will happen. The body does heal itself.

Taximom’s advice hit home for me. When my youngest son’s teacher spoke with me about her concerns about my son’s lack of social interaction (he, as all of my children, are undiagnosed), I told her that I didn’t feel it was really doing him any good to try and force him to interact. I suppose I could liken it to how in the old days (according to my mother), the teachers would try to force left handed people into using their right hands. It just didn’t work, and only made the children miserable. Except that I might, at least from my own recollections of my own situation in grade school and high school, more accurately compare it to insisting that a child in a wheel chair get up and walk. The idea that I might make small talk (and let’s face it, from about second grade on ‘playing’ really means talking) was about as ridiculous as the notion that a pig might fly.

I’ve often told myself that well at least it’s a little bit different for my own son, in that he at least is not alone. I know that there are others like him in his school. Altho I frankly don’t think they ever get together the same way that Taximom describes with her son.

I did speak to my son’s teacher about our concerns—I believe it was his third or fourth grade teacher, and this was six or eight years ago now. I told her at that time that I only hoped that she wouldn’t do anything to make him feel bad or ashamed about the fact that he is so very quiet. “If he’s anything like me”, I said, “there’s nothing he can do about that.” I told her though that I did believe that it was a very good idea if she were to try to encourage him to interact, and to encourage others to interact with him, but only if she thought she could manage to do that without shaming him. (I frankly didn’t have any idea how that might be done but heck she was the teacher so I hoped she might…)

I have always suspected that the woman who turned out to be my best friend growing up was a child that a teacher spoke with at some point, and planted an idea in her head -- “Go, try to talk to that little girl.” On our walks home (I think we were about eight) she was quite persistent, and eventually I was able to forget, at least with one person, that I was unable to make casual conversation. And although I never found out for sure if it was an arranged friendship, I think that even if it was in the long run that didn’t really matter to either of us.

I’m not sure how much effort the teachers have put into doing this sort of thing with their students. At any rate, when they reach the age that mine are now (teenagers), there isn’t much that they can do, I think, to try to foster these relationships. I only hope that the aspies out there in the schools, now that there are more of them, manage to find each other and relate somewhat.

My son is corrected every time he throws food on the floor, climbs up bookshelves to reach a DVD, shoves, hits, pushes and slams doors. I don't let him run in the streets or parking lots, I insist we hold hands and walk looking "both ways."

Ben recently started school and after a week of half days I came to pick him up a little early. I saw that the teacher had lined the kids up, there was my son standing in line waiting patiently for the line to start moving. How could this be possible? Ben standing in line, patiently? No way, but it was!

"I know that he didn't have the faintest idea HOW to play with others, and the neurotypical kids didn't have the faintest desire to play with him."

I totally get what you are saying taximom, but when your son is making a decision to play alone he has done so based on certain rationalizations and perceptions based on his understanding of the dynamics, dynamics that may be extremely flexible and can be manipulated. You made a great point about attempting one on one play dates etc. and I'm not so certain that Ms. Ruttenberg hasn't done that, in fact I imagine that she must feel as though her son is capable of playing with others because she was disappointed he was playing alone and somewhat surprised not be find him in his "likely" spots, spots where other kids were playing, where his sister plays. She was embarrassed that the "school" might notice him playing the way he was.

"My eye scans the crowd, stopping in the likely spots. Sandbox, no. Spinny swing, no. Climb structure where his sister usually plays, no. Water fountain, no. My eyes scan until I see a boy alone in the far field, miming some indecipherable action for much to long. Bingo. I take a deep breathe. "Calm, peaceful, accepting." I walk hurriedly past groups of his classmates playing tether ball, ball wall, foursquare. I hope they don't see him out there, in a solo miming frenzy. I realize I am holding my breathe, as if I can stop time and keep the school from noticing him as long as I don't breathe."

I don't want to come off wrong, I'm not arguing, each of us handle things differently, we do so because we know our kids. To me if a child can do it once he can do it a million times.... or so it is reasonable to hope. I feel that Ms. Ruttenberg's account is that of disappointment, and a confession of human emotions that she is not proud of. I'm not brave enough to admit my self perceived short-comings much less post this post under my true name. I admire Ms. Ruttenberg's courage and I respect her because she said, "He is healthy. He is beautiful. He is trying so hard. He has come so far. He cuddles with me at night. I love him so dearly. Thank you God for my beautiful son." and I believe her.

(anonymously posted)

while autistic kids thrive on rules, I don't think that giving a kindergartner a rule that "we don't play alone at school" is either helpful or realistic.

I never gave my son that rule, because I know that he didn't have the faintest idea HOW to play with others, and the neurotypical kids didn't have the faintest desire to play with him.

I also realized that after a long day of trying to fit in and follow rules, he needed down time.

What I did to was organize lots of one-on-one playdates, and play with him myself.

It wasn't until he was in 4th or 5th grade that we realized that he had the uncanny ability to walk across a room crowded with other kids and pick out the only other autistic/Asperger kid here, even though they'd never met before.

And they would talk with each other , and UNDERSTAND each other. And they would play--and look like they were normal.

Parenting and teaching supposedly normal children is extremely complicated, because there are so many ideas about What Is Right--and it's the same with autistic kids.

We hear about ABA, Lovas, mainstreaming, special Ed, and each method contradicts some other method.

When it comes down to it, you have to listen to your own gut instincts. Just because some Expert says that your child needs to play with others doesn't mean that he CAN , or even that he should. Why should he have to do something that is obviously NOT rewarding for him , when the other kids get to do what they want to do at that time?

Forcing him to behave socially isn't going to teach him social skills, but it will be a source of frustration for him.

Why not set up a playdate for him that guarantees some amount of fun for both him and for the friend? For example a trip to the MacDonald's climbing room, or making cookies or edible playdough? Then he can learn that playing with another child can be something to enjoy--even if it's more side-by-side play rather than back-and-forth play.

If he has an aide at school, or even just a teacher aware of his dx, they could (and should) facilitate his playing with others, either one-on-one, or incorporating him into a group game.

I do think there's something wrong with setting it up so that you are disappointed in him when he doesn't play with others a pick up time--especially when he can feel your disappointment and feel he has to apologize!!

And you are obviously so stressed about pickup-I'd say that something is not working and something needs to change.

My son is mostly recovered, but last year he totally melted down in class over an assignment, writing a few sentences about "My Favorite Friends" as part of a book they were making about their favorite things. Apparently, he's been putting off completing this part of the assignment. Favorite foods? No problem. But favorite friends? He was completely gridlocked and in tears, wanting so much to have friends -- and to be able to complete his assignment -- and realizing that he didn't. I happened to be there helping in the classroom that day, thank God. It took the entire recess to talk him off the ledge while the rest of the class was out playing. I don't know what would have happened if I hadn't been there.

Kim, I have found people are very willing to learn also. I am very fortunate that my nonverbal daughter loves to go places and does not get stressed around people the way some children like her do. People usually really like her also. I do admit to feeling like Cecily does sometimes that she cannot play normally at all, though. Especially when all her siblings are milling around the house interacting with each other on a Saturday morning and she is talking to the vegetables on the side of an empty can of V8 juice.

I wonder sometimes what she is doing when she does things like that. I wish that she could tell me what she is thinking about like Cecily's son can.

What I see in this story is a school not doing it's job. Where is the facilitated play? There is nothing more painful than arriving at school only to see your child isolating themselves in the corner of the playground. They need to be shown how to interact, and now that the admitted number in Autism is 1in100, the other kids need to be on board and learning how to bring these kids into play.
Our son wants friends so badly that he is constantly creating play in his mind, speaking in all of the voices like a play.
And I tell him to look around, everyone is not talking to themselves, they are talking to each other. But no one wants to talk about what he wants to talk about. No one wanted to pretend there was a lemonade stand for your boy either.
We are not ashamed of the way they act. We want them to fit in!
Every single moment is a teaching moment for our kids. We were also at a funeral last weekend, maybe I should have let him sing Amazing Grace as loud as he wanted to. Maybe that would have been a teaching moment for everyone else.

Please don't lose hope. We have a daughter who has Down syndrome and autism. She's 16 now. She became severely autistic after her 2nd MMR, though we didn't understand what had happened to our beautiful little girl at the time. She would sit alone, sifting sand for hours on end, had no interest in any kind of interaction with anyone any more and screamed constantly (sounds familiar, I know). She was completely lost to us. It wasn't until she was 8 years old that a wonderful OT came into our lives and mentioned the word "autism" and told us about a DAN doctor she knew. Fast forward to today, after dietary changes, supplements, chelation, etc. She is, once again, a very social little girl, who loves her family, people at school, going to her siblings sporting events, restaurants, movies, and many other things we simply couldn't do when she screamed all day. She is not as high functioning as we'd like, probably because we started our biomedical journey so late, but she continues to improve and learn. Most importantly, she is happy and enjoying herself, and able to interact with people again. All we can do is accept them for who they are, but never give up trying treatments that might make their lives better. As a side note, her brother also became autistic after his MMR, which we unfortunately gave him just prior to our visit with the DAN doctor. We started his treatments immediately, and he is totally recovered today (top student, all star athlete, no social problems, a true success story). Never lose hope!

I can relate - I cringe every day as I wait in the car pick-up line, hoping and praying that our 11 year old had a good day and is fitting in with his typical 5th grade peers. Yesterday, when I reached the 5th grade line, our son was yelling "I DO believe in fairies! I DO! I DO!" (repeating over and over, like in the movie PAN). His friends were laughing at him, and shaking their heads. When I got him into the car, he told me that he told his home room class that the tooth fairy gave him $5 last night for his tooth. Peers told him there IS NO TOOTH FAIRY, and he's been repeating the mantra off and on all day, because if they don't believe, the tooth fairy will die.

At age 11, we're having to burst his balloon that not everyone believes in the tooth fairy, santa claus, the easter bunny, etc., and these beliefs need to be kept private. So sad, for a child who has come so far on his autism journey, to take the wind out of his sails....

I would never subject my child to that kind of pressure in public. And certainly not at their school in the presence of their peers.

Not allowing a child to decompress when and where he needs to, I think, would exacerbate everything else.

This is just another parent's point of voice.

Bad Apple, this post is just one parent's point of voice. And it explains how she felt at that playground. It takes guts to share these stories.

I take my girls most everywhere. We even went to a funeral this past week - church only, not the wake. They were well behaved until the noise of the luncheon got to one of them. So we left. But every parents deals differently.

I tend to tell the world, "Hey, this is who we are. I'll explain the situation to you if you're willing to listen." And people mostly listen and are happy to learn.

KIM

I know that feeling and that internal pep talk all too well. No matter how improved our kids are doing, we always want more. On one hand, you don't want to seem ungrateful to those moms who would be happy to have their child where yours is, but what I have found in speaking to other autism moms, is that once you get to one level...you want more. It's okay to want more. We deserve more. Our children deserve more. Until then, we continue to give ourselves the "talk", put on a happy face, and breathe deeply.