need advice...spectrum kids dealing with their ASD

[Mother's Heart]

Hi guys. I know a lot of you have experience with kids on the spectrum who are verbal and of talking with them about how their autism affects their concept of themselves and the impact on their lives. I've got a newly 'verbal' teen and I would welcome any thoughts you could share with me, for me to consider and have in my mind for future interactions with my kids. here's what we talked about yesterday. Our conversations tend to be brief, with many breaks and held in sessions over days, as it is a painstaking task to communicate with facilitated writing, so this is just yesterday's small beginning:


my mother's heart hurts.

I asked my son to talk to me for a little bit. (recently learned to communicate in writing,,,,i'm getting to know more of his personality and about his 'thought life")

today during homeschooling when I asked him to tell me what he wanted to talk about during our 'talk topics' time he said "i want to talk about Autism"
(I had thrown out a few options...and I'm not sure I mentioned that one or not...i think I did.)
He has just opened up the subject and the conversation isn't over but here are the comments he made:

I asked what do you want to say about Autism?

DS:Autism isn't a bad thing. (that gave me a false sense of "allright!" a good start!)

DS: Why do they call me Autistic?

(Iasked him if he knows what Autism is...it really is the first time we've actually talked about it back and forth to each other and I wanted to figure out if he was asking what autism is or why he is considered autistic or what):

he answered: "yes. I know it is a thing that is too hard to explain in words and I know you aren't anyone who is going to be any good if you have it."

i said I don ‘t agree with that. He said "i do". Then he left. (playing outside was beckoning him but perhaps he needed to exit the topic awhile too)

at a later point I had written on the page, Do you think you have autism? his answer, a simple 'yes'.

I wanted to know what he knew about Autism and what he thinks/feels about it....but I didn't want to hurt this badly for him. :(

any wisdom from you other parents?

I wrote this yesterday....then saved it for a day....i'm never sure how much of my children's privacy I want to lay open. But I'd like suggestions of ideas and or literature aimed at upper gradeschool kids that might be helpful.

We love him the way he is and whatever he comes to be. I can't believe that in spite of all the years of emphasizing this to him and valuing him as he is, and valuing all folks as they are, that he's come to this conclusion about this.

[cckids]

My kids are still young and honestly we only focus on skills to work on and at this point ignore all the labels.
I HATE labels when kids know them, they try to use them as an excuse. Most kids (from what I see at work) don't seem to connect a label to how it affects their life until around 15. One of the characteristics of most ASDs are a lack of insight. Insight is knowing and understanding what is going on inside you and where your problems are coming from. If you define the ASD with some of the obvious affects, like that "Autism is just a word to explain why you love animals more than most of the other kids, and why sometimes things are so confusing when you are trying to make friends."
Carol Gray (www.thegraycenter.org) does have some social stories that helps walk through this topic. I know a book called "Asperger's in Adolescents" edited by Willey also had a whole chapter about this. That book was a great tool for my work ( I work on an inpatient mental health unit with teens and kids.)

[Mother's Heart]

do you think it's about the label? I was thinking he was unhappy about the challenges of the disorder, instead of what other people think about him. Maybe I missed that sense. I hope, rather expect, that we will be talking more about it.

[tgrimes]

It looks like he's not asking what you think, he's asking what others think. Since everyone has a different philosophy about what to 'do' about an autistic person, just start with phrases like "Some people think..." but then back it up with the philosophy you believe in, and why you came to that.
You can't shelter him from things but you can give him the knowledge to deal with it in his own way. Based on what he said, he is well aware of having a disability.
when he said: "...I know you aren't anyone who is going to be any good if you have it." but then earlier saying "it's not a bad thing..."

That would tell me he might be getting ready to form his own opinion... Give him the ammo and don't be shy!

[tgrimes]

MH - thanks for your comments on the on the thread about that the thing with my son, it really helps. I have been thinking about this some more too, and remembering back to a time when my older son started asking about autism.
He was about 12, and he seemed comforted by going over some of his worst symptoms and some of the things that really frustrated him, and hearing that some of it might be due to disability and not part of his personality. We also taked about things he might eventually be better at than other people. I think it gave him the confidence to work on things more, and a reason to forgive himself for things he couldn't work out right away.

[milivica]

I'm just posting my first thought, I have to really think about this much much more. But my first thought was, I wondered how it would feel for him to read things from other people on the spectrum that also use FC...so there's a clear parallel between the people's writing, and himself.

Also, if it would be better for you to be the questioner and him the questionee...can he be in a position to explain to you what his autism is like for him...know what I mean? Also, would a 'medical' definition be of any help to him...although what I do not like about that, is it is so based soley on behavior.

Once upon a time, autism (aspergers) for me, was seeing everyone in the world have lots of what I wanted most, and could not have. Friends, shared giggles, people with other people everywhere I looked. They had these 'lives' so mysterious to me...walking together and turning their heads to one another at the same time to share a smile. They knew secrets I didn't know, that explains how to turn your head at the same time to face the other person, smile at the same time, and to know to not stop walking either. Everywhere I looked, people walking, talking, bicycling, car riding...with others. I had no one ever. And everyone else did. Everyone else could do this 'thing' and knew these secrets that no one was telling me, so I couldn't do anything right. I would, I want to! But someone has to tell me all the secrets. How stupid I must be, that I don't know the secrets...or...how discusting I must be that no one will tell me.

I'm scared to remember more, cause I don't ever want to go 'there' again. Weather autistic or nt, if you're at a place where you realize your life sucks, you might need acknowledgement, validation. From there, you can identify the things about your life that make it harder for you than other people you know. And from there, if you're lucky, you have the ability to make a conscience decision to come out the other side, grab as much joy as life will allow and do the best you can to live a life you can feel proud of.

Dunno if any of that helps. You have to go by your instincts, as his mother. You know how he will process information. I do try to becareful not to make autism a bad thing, or a good thing. It just is what it is.

[Mother's Heart]

apparently you hit one of the nails on the head Mili, judging by the intense feelings i'm having inside reading your post. aye!

hmm. school bus. later.

okay. yours too TGRIMES.

[Mother's Heart]

MH - thanks for your comments on the on the thread about that the thing with my son, it really helps. I'm glad my comment helped.

I have been thinking about this some more too, and remembering back to a time when my older son started asking about autism.
He was about 12, and he seemed comforted by going over some of his worst symptoms and some of the things that really frustrated him, and hearing that some of it might be due to disability and not part of his personality. We also taked about things he might eventually be better at than other people. I think it gave him the confidence to work on things more, and a reason to forgive himself for things he couldn't work out right away.


I think my son is developmentally about 12 in most ways. (CA=13yr10m) this insight is quite good. I will bear it in mind.

I know his sister from about that age has really been comforted somehow by going over and over her challenges and spending time trying to pin them down, analysing them, practically to death. seems necessary for her.

I know the child only gives me the summary of what he has already worked out in his mind. It is tough in these situations when you have to condense what you think down into a few short statements. It should be a sit-down and talk it out all around the different thoughts and questions. I am eager to ask him some more.....the suggestion by mili to get him to explain what Autism is like from his perspective is a good one methinks, and a do-able one. He's so smart...and most folks didn't know that until he found a way to communicate in 'our' language. (at least HE knows he's smart. he's said so! :D )

thanks guys...any other thoughts or observations are welcome.

[Mother's Heart]

mili, i'm still reacting inside to your post...and mulling it over. This paragraph was like a bolt of lightning for me:

"Once upon a time, autism (aspergers) for me, was seeing everyone in the world have lots of what I wanted most, and could not have. Friends, shared giggles, people with other people everywhere I looked. They had these 'lives' so mysterious to me...walking together and turning their heads to one another at the same time to share a smile. They knew secrets I didn't know, that explains how to turn your head at the same time to face the other person, smile at the same time, and to know to not stop walking either. Everywhere I looked, people walking, talking, bicycling, car riding...with others. I had no one ever. And everyone else did. Everyone else could do this 'thing' and knew these secrets that no one was telling me, so I couldn't do anything right. I would, I want to! But someone has to tell me all the secrets. How stupid I must be, that I don't know the secrets...or...how discusting I must be that no one will tell me. "

I'm trying to figure out what I will do with my behaviour with him from this insight you shared. I'm half tempted to let him read it and see if he responds to it.

You know, this last few months is the first that he's made us really aware of his desire to socialize....play with those non-existent friends...etc. He has become rather assertive in his attempts to get to play....but then when a new child in the neighborhood approached and requested to befriend him, invited him to explore the field behind his house, donovan wanted to go but didn't know how. Had to be SO guided (practically forced) just to follow the two kids back there. But that boy...he's amazing. plus he's one of only two kids who've ever tried. I have hope he will keep trying to be friends. I hope winter doesn't quash it. It's almost impossible to interact with Donovan. You have to do all the adjusting and structuring the interaction. hmmm. same thing school is saying about my daughter's conversations. sigh. :/

this son of mine screams out "i need RDI"....I'm so unable to dive into any moreat this point. But it's on my radar...i feel cruel making him wait....but, well....here we are. Also, AIT. Those are the only two big things left, other than my loving and guiding him, that I think might help him.

[paulmoosberg]

i would just like someone to point out the pros that autistics seem to have throughout the years? like incredible memory for things of interest. the ability to spend days in thought on a single subject (which can be a pro and a con since too much of anything is a bad thing). but the ability to drown my thoughts in a single subject of interest helps me explore my own imagination and have fun at the same time. same with little mike, he can play who wants to be a millionaire for days and remember all of it. every question (because i worked with him to start reading the questions) and every answer heck he even remembers if he answered wrong on a particular question.

i think i started a thread a while ago about pros and cons, but i just would like to see people talking about both sides of the spectrum instead of just the cons. and i know it is hard because the cons are very easy to find like the temper tantrums, and the ADD focus, etc. etc. but there are a few things that autistic have an advantage than being normal? i think? i could be wrong, or maybe it is just me trying to state how i am not all cons and or i am not just a bad situation. that i have some good things about me? just i have a lot of bad things too. but the resiprodal really helps, even my wife has noticed a difference since i have been on it.

i don't know, i never do. but i guess i am trying to say that any autistic doesn't just have things that hinder thier life. they have things that help it too. like i remember someone posting how thier husband with asperger's did a rubix cube and the lady was impressed and wanted to keep seeing him. or something like that. the pro in that situation would be the amount of thought and time that austitics can put into an activity if they enjoy it. me personally i never liked rubix cubes? not sure why, just also like thinking instead of doing stuff. i could sit for hours when i was a kid and in my adulthood, and do nothing but think, not even say a word.

but that is me, like i said i might be pushing the whole pros and cons thing just because i don't want a self image of myself as being the debilatating parts of asperger's. so maybe i am just making this stuff up? but i like to see myself as having some good traits, and it seems i can identify these traits within the base defects of autism. just not a defect as i try to find the positive things about myself so i don't feel too stupid or sad about who or what i am.

i'll stop rambling.

sorry just another ramble?

why do some autistics have a low self esteem? seems i have had self esteem issues since for ever. heck when i was 5 i use to bang my head on the wall and think that i was no good, or that i shouldn't be here and everyone else's life would be easier? not sure why, but it corrilates to the child thinking how if you are autistic then you can't do anything good? i just thought i would point out that. heck it is probably on the base defects if i were to guess. or maybe not? what do i know, i just like patterns, and seems there is a pattern between what the kid said and what i have said when i was a child.