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Overwhelmed by Autism Info


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Well, I've been doing some research today on a subject that will probably get me chewed out or flamed by somebody, but here goes nothin'.

My oldest, age 4, is autistic. We just found this out very recently. And I am so confused. It's just overload and it all contradicts itself. First off, some sources say that autism can't be dxed at age 4 in the first place, while others say "the earlier the better." So who knows. I won't go into the evaluations and crap right now.

Instead, I went to do some research today. Finally sort of getting used to the idea. Wanting to be good, responsible, informed parent. Etc.

And I see:

Cure autism now! Or don't, there's nothing to "cure."

Asperger's isn't "on the spectrum" so don't feel bad that it runs in her father's side of the family. Or go ahead and blame him, because Asperger's IS a form of autism.

There's nothing TO blame anybody for because autism is great. Or autism is the soul sucking, life destroying demon from the ninth hub of hell come to consume us all and stalk our children with dripping fangs.

She's only like this because you got her immunized.

ABA worked miracles for her kid! But ruined his! Make them look normal! Or stifle and invalidate them if you don't! If you REALLY loved her, you'd accept her the way she is! If you don't do anything to try to help her communicate, then you're neglecting and/or abusing her! But she IS communicating, you just don't understand her!

And how could you even ask these questions? Everyone should know this stuff already and you're just plain ignorant if you don't!

THAT is what I came up with. ;) I don't want my child to become my "research project" but obviously I need to figure some stuff out and I am completely, totally lost and baffled. I feel stupid and inept. The parenting sites out there all seem skewed pretty rabidly to one side or the other.

A mother on one of those sites suggested I look into finding a DAN doctor. I can't even find any concrete info on DAN unless I want to download video clips. I'm beginning to think this is actually a cult of some kind and I'm afraid of being brainwashed by subliminal messages if I view the clips. I do know she has two of her children on some kind of chelation therapy and is amazed at how "normal" they are now, thanks to her DAN doctor.

I don't know. It's not that I can't find info. It's that there is such a glut of it and I don't know how to interpret it. Sites on Asperger's don't seem to take into account the realities of low functioning autism (some argue there isn't even "high" or "low" functioning in the first place, but let's not go there...see the problem I'm having?)

Argh, argh, argh. Help!

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As you, since crazyboards was started by and continues to be run by adults on the autistic spectrum we're a little biased on these issues.

Run far far far away from anyone who thinks chelation is sane. There is zero scientific basis for thinking it might work and it kills. Any questions?

ABA is a fancy name for dog training. The longterm emotional damage that can result makes other approaches, including just letting the kid be himself, preferable if at all possible. Of course I've never been in your position as the parent of an autistic child so it's easy for me to say that.

Pretty much anything linked to from here is trustworthy:

http://www.neurodiversity.com/main.html

The one thing I beg you to do is to listen to adult autistics and not just to parents of autistic children. Many parents tend to go for solutions that make things easier for them but not always for their kids.

Places to find adult autistics to ask about these things:

http://www.aspiesforfreedom.com/

http://www.wrongplanet.net/index.html

Make sure you bug maddy about this when she comes back around. She's sure to give you an earful.

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I'm not autistic, and I don't know anybody IRL who is... so FWIW...

I am a mother, and if I were presented with this challenge, above all else, I would pay attention to instinct. If someone seems smarmy or makes you uncomfortable or if a therapy or treatment doesn't seem to make sense to you and your child, then it's probably best to keep looking.

I've been questioned (quite rudely at times) about some parenting decisions I've made, but they're ones that have come out being the best for my daughter. I wasn't always "certain," but I always "had a feeling."

I don't want to tell you to just "go with your gut," but don't ignore your gut either.

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Yeah...what Elvis said.

I am the mother of a 16 year old boy with autism. His actual diagnosis is Pervasive Developmental Delay - NOS. He attends Special Education classes at the local high school and will be able to go through the life skills program until he is 21.

His speech level is like talking to a 2-3 year old, but he understands way more. He reads and does math at a 2nd grade level but makes improvement (at HIS timetable...not mine ;) )

His prognosis is still unclear at this age. He may, way in the future, be able to be on his own, but it is doubtful. He can cook and does chores around the house just like his brother. But he has absolutely no concept about money. Just doesn't compute for him.

The only "treatment" or medication we ever tried for him was a few secretin injections. It didn't help. Total waste of time and money.

My brother-in-law has an adopted daughter who is autistic. Her functional level is similar to my son's. But they have tried all kinds of treatments and medications. Her overall behavior is much worse. All of the meds, classes, etc.. haven't done a damn thing for her except piss her off.

DAN people scare me. They seem to be more about getting research grant money than actually finding the cause.

I don't mean to make you think your son will never grow up to be an independent person. My son and his cousin are just 2 cases. Autism comes in about a million different flavors. After all, a girl in my belly dance class is autistic and schitzoeffective. She is a bright fun person with a job, her own apartment, and a boyfriend. You never know what your son will be able to achieve, so treat him as if he could conquer the world...he just might!

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Faith,

It is good that you are taking time to consider all alternatives and actually putting thought into what is best for your son. That is what makes a good parent I think. I don't think that the parent thing comes with an instruction book except for in that movie "Raising Arizona" and even then I think that was used for comedy. And that movie is funny. See it. It will do you good.

I think.

I think I will see it soon too.

Like WZ typed, autism comes in alot of flavours. My 9 year-old niece is only now learning to read but she can draw almost photo-realistic renderings of animals. She didn't speak until she was almost 2 years-old but now it's hard to make her to be quiet. Granted she's bipolar, but you understand. We speak the same language, just different dialects. I get along with her quite well.

My almost 14 year-old nephew is an aspie and he gets by amazingly well. I'll be homeschooling him this up-coming schoolyear due to bully problems and budget cuts that won't allow the district to keep up w/the IEP he needs, but those are things that just have to be done.

I don't remember where I was going with this but if there is anything you need or something feel free to pm. Sorry I'm having problems right now explaining. I had to take extra pain meds.

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Thanks for all the input. (Though just to clarify- my kiddo is a she - sorry about that, my pronouns were all messed up. Not a good idea to type when brain is in too-much-info shutdown mode).

I have a lot to look at. VE, you make a good point. Much of what I've seen so far is to make my child Look and Act Normal. Which WOULD be a lot easier for me. (She is easily equivilant to at least 3 children all by herself at times lol) Not necessarily best for her, though.

Wifezilla, thanks for your perspective on this. I hope she'll be independent one day. At first, my thought was "what is she going to do when we're dead if she can't take care of herself??" and now it's "I'll be happy if she can tell us when she needs something instead of relying on my mind reading powers." ; )

Serra & Maddy, thanks. I will have to go rent that movie. I've never seen it but sure could use a comedy. My kidlet loves art too but her real skill seems to be aligning her toy dinosaurs in a precise manner that will prevent the destruction of our solar system. She will not tolerate any interference or tampering with her mission and I am quite sure we will all be thanking her one day for her noble service.

Of course, she's never SAID that's why she does it. But I'm giving her the benefit of the doubt. ; )

I'll let y'all know what I come up with. With any luck, I can psychically summon InfoNut over here to add his 2 cents. It's disgraceful we don't have something put together on this subject already, I ought to keep together what I find useful to remedy that :embarassed:

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"My kidlet loves art too but her real skill seems to be aligning her toy dinosaurs in a precise manner that will prevent the destruction of our solar system"

Really?? Max swears it is matchbox cars strung end to end that keep the planets from colliding!

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Oh it is so cool to watch her doing it. :)

But it reminds me of something I saw during my weekend websurfing that kind of showcases my point here. I will have to find the URL to demonstrate what I'm talking about. But it was this woman who, to understand autism in her kid better presumably, put her child through all these "tests" she devised. She would take those plastic Easter eggs, separate the halves, and give them to him. He would put them together and sort them according to color. So she'd take away one side of the matching halves (if that makes sense.) He'd get upset but he'd sort them according to color and try to stack them. She'd throw them around the room at random. He'd flip out. Etc. etc. If he'd spin his car, she'd take it away. Then he'd flap his hands. So she wrote that he was basically being spiteful because "he knew I couldn't take his hands away." On and on. He has time RATIONED OUT to watch the ceiling fan when he's "really" upset.

Oh good grief. Give the kid his car back at least.

To ME, that approach sounds like How to Be a Jackass 101. But every parenting-an-autistic child forum I've found so far suggests that this would not be a big deal- essentially the goal is trying to modify these behaviors so the child is Normal. But it looks more to me like masking the behavior, not "curing" it. And why deliberately do things to piss somebody off- especially a CHILD? I don't think I could do that.

For all I know that's an acceptable way of handling it, but I can tell you that if it were me, I'd be more than flipping out, I'd be booking my therapy YEARS in advance. ;)

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That is what scientists do to animals.

Not what I think parents should be doing to their own kids.

But that is just my opinion.

I think that is cruel.

I am not a science experiment.

Although I've often been treated like one.

I will explain better later.

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Faith, i'm not an Aspie, just a weirdo who has her own internal drummer pounding a different beat & likes to hang out on the Autism board cuz they make the most sense to me....

all that 'destroy the bad behaviors so they fit in' kind of stuff seems so very very cruel to me. most of what i hear from an autie is that the funky (to us) behaviors somehow helps them with their sensory intregation issues. i've tried to imagine how it would be to be hypersensitive to noise and smell and sounds and textures....it almost seems to me like people who stim are kind of like doing their personal brand of meditation and using physical motion to help them zone out, just like some people count breaths or daven or walk or focus on one thing. so taking away that focus and the behavior that helps them focus and shut out the world seems so counterintuitive and cruel. i mean, NTs PAY people to teach them behaviors to help them shut out the world during meditation! that's just my humble opinion from a non professional who's met all these auties her and thinks 'wow, they are really neat people. they think so interestingly'.

i hope you get over the shock soon. it would be a big blow cuz like you, most of the stuff written is all about 'make your child normal! avoid the tragedy' instead of 'wow, cool humans'. it's really one sided imho & if it were my first into to autism i'd be really overwhelmed.

i guess it really falls down to the basic job of any parent: balancing the need to help your child exploit their own potential and individuality to their fullest while balancing that against the need to help them learn how to fit in socially with other human beings, so they can have rich full lives being themselves with other people, comfortably. same job as any other mom, you just have been given different material to work with.

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Ok I think I am ready now and have a block of time to explain. And if anything is jumbled, ask for clarification because I'm not good at explaining things. Sorry.

I've been working with my niece to cope in the NT world. Mainly by helping her deal with her anxiety and her need for perfection that causes her so much anger. It's not about what will make things less embarrassing for her mom, because frankly I don't give a damn if it embarrasses my sister or not what my neice does. It's about what's best for Megan's mental health and how she can deal with her sensitivities.

If she needs to spin, bounce, line things up (or stack things), or twist her hair in order to get her jumbly thoughts and everything else straight then that's what she needs. (I'm guessing that's what it is, I can't understand when she explains. But that's what I do when everything comes in on me. It's the same language, just different dialects.)

But we also try to teach her how to "get along" with the NT world. (Mainly her special ED teachers, OT, Therapist and Pdoc.) Because let's face it, I'm still learning too. And I learn alot from what she learns. And she teaches me alot and she gets a real big kick out of being my "social skills teacher."

And this was a kid that they didn't think would do much or go very far.

But I would be lying to you if I told you that everyday is just a bed of poppies that I have to watch Megan. Because after all, she is a kid.

She gets in the mud and becomes a mud monster AND tromps all over my mother's living room carpet. THAT brought out HELL MOMSTER from the NINTH CIRCLE, trust me! I thought my mom would skin her ALIVE!

Then there are the days where we BOTH get on eachothers very last nerves and we get into the silent screaming matches that leave us both deaf AND in need of a nap.

Although when we wake up we have no idea what we were mad about and we both get popsicles afterwards from dad. We're silly like that.

And that's not the half of it.

I'm getting lost again. Sorry.

I really need my Adderall.

Anyway, CAN, DAN, Mothers on a Mission for Insanity (or whatever they're called) can all kiss my ass. They scare me.

I hope I didn't confuse you more.

Sorry.

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Hi Faith (and anyone else who's lurking and wondering about this)

I'm a mom to a 14 year old son, Nicky, with high functioning autism. I also happen to be an Aspie myself. I am happy that you have gotten some really good advice here so far. I just want to chime in with my agreement...

For me, it's been all about helping my son adjust to a world he doesn't necessarily understand...and a world that isn't always very comfortable. Those are the two things our family always keep in mind.

We try to explain things, we try to be understanding and we try to help him be comfortable. These are the main things we do:

1. We try to give him advance warnings and "heads up" whenever possible. Kids with autism like structure and they don't like surprises. We use schedules when we can. We let him know when strange things are going to happen like a plumber is going to come fix the shower at four o'clock--yes even though he's fourteen years old, he still likes to know this kind of thing.

2. We let him have his behaviors that make him feel safe and comfortable. Some people refer to them as stimulating behaviors or "stims." Stuff like spinning in a chair--we have a chair on wheels and that spins around at the computer and he can spin to his heart's content and no one can tell him to stop. Some kids will flick their fingers or click a pen (I'm guilty of that one). Whatever it is, it keeps the stress level low and too bad if other people don't get it.

3. We keep volume levels low, we don't allow loud noises like popping balloons or certain repetitive noises that bug my son, and we have no fluorescent lights because he can hear the hum and see the flickering, we keep our thermostat a bit cooler than others might...etc. Kids with autism...hell, adults with autism have a lot of sensory sensitivities and it's important to learn what they are and make the environment comfortable for your daughter. Just like a dripping faucet would drive you nuts and you'd have it fixed...well, you know, you get the picture.

4. We expect our son to take everything literally and we prepare for that in advance when we say anything to him. Be ready for this. It will take a while to get used to, but eventually it will be second nature and you'll actually develop a sense of humor about it. Your daughter may or may not. My son didn't get a sense of humor about it until about a year ago...and some things, he still doesn't get the humor of. That's okay.

5. We stick up for our son when ANYONE makes fun of him or anything he does or says that isn't like other people. We never allow anyone to make him feel less than. Ever. Not teachers, not extended family, not other kids, not anyone.

It's been a contstant battle to learn how to accommodate and adjust, but that's what we do. I refuse to treat my son like a dog that must be trained. No way am I doing that, no way no how. He is unique, I respect that, and he is actually a very happy person because of how we treat him.

I'm with Maddy. The CAN and DAN people can kiss my ass, too. And get out of my face with the immunization crap! It's been scientifically debunked over and over again. Oy.

And all those ABA people can get out of town, too. Check out TEACCH if you want a better approach. They let kids with autism be who they are and are quite compassionate.

Take care and PM me if you want anything at all...

~Cat

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faith,

I heard this piece on NPR on my way home from work today. The author was diagnosed with Asperger's at 36 as a result of his young son being evaluated and diagnosed. He's a wonderful speaker and has formed Asperger's support groups. Have a listen. I think you'll appreciate his take on the subject.

Greeny

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Guest espressogrrl

Hey Faith...

I really feel for you. I am going to try and get my sister on here. Growing up, I lived with my mother, her brother, his son Matthew, and my grandparents. Matthew was severly autistic. Living with a severely autistic cousin was incredibly hard for my family.

Matthew was diagnosed at 2 1/2. His mother was in denial. My family had to fight for custody of him and didnt get him until he was 6. Today, we believe that if we would have started work on this when we knew about it, he wouldnt be as severe as he is today.

My sister has OCD/ADD/Borderline and social anxiety. It's common in families with autism. My sister is super severe with her MI's. But the great thing is, she totally turned her life around with Matthew. His father and my sister tried EVERYTHING in the book, from different kinds of therapy to diet. My sister seemed to have a certain kind of understanding with a child that barely talks. She seemed to use her MI's to understand his needs. Sis became Matthews shadow, at (a special ) school and all day every day. Eventually, Matthew was accepted at Johns Hopkins Kennedy Krieger in Baltimore Md, one of the worlds best schools for developmental disabilities. Let me say this again. SEVERE autism. They were very impressed with his progress, despite the severity of his autism. They requested to see my sister, and eventually hired her. Today, she works with some of the most complicated disorders in the world. I am really proud of her.

If there is a therapy that has ever claimed to help, she knows it. I have been trying to get her on the boards the last couple of days, she has been a little busy. But I will try again. Maybe she can help a little. She's been with Matthew for 15 years and at Krieger for almost 4 years.

Hang in there....

as for ABA, it is really hard to tell. From what I understand, its great in an autistic childs development if it is EVERYWHERE. it has to work - school, home, everywhere. And everyone, the teacher you, the whole family. If it's only in someplaces it doesnt work so well. But my sis knows better than me.

all my love and support -

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Guest espressogrrl

Hey Greeny,

That was a great article. Thanks!

And Espresso....

It would be so cool if your sister could stop by. If she can't, I understand, but it would be great to hear from her.

Thanks! Like i said in a PM, my sis works with the most severe of cases. So that is what she knows. I don't know if she would be helpful. She has private gigs on the side, where she will shadow or work with kids that actually talk. I think the difference between how you would treat severe and mild autism would be huge. All I know is that I am thankful for Krieger. It takes really severe cases and tries very hard to make sure these kids never have to be in an institution, even though they will never function alone. I am so impressed by her!

Here's my favorite story of hers. One kid had a favorite toybox. It had three sections in it, with 3 different kinds of toys. In the middle of class, he would dump the toybox all over the floor. Every day, many times a day. Most schools for special kids would punish the kid for doing it and not participating in class (and seriously, don't think class is like regular class, a lot of it is motor skills) - consider it 'testing authority' and give the kid a time out. My sister was able to recognize that it was an OCD side effect of autism, he didnt want to dump the box or test authority. He liked being able to organize the toys in the different sections when the behavior therapist / teacher made him pick up the toys.

Unlike those of us who use words and sentences to explain our compulsions or thoughts so that we can find the route to healing, these kids are not able to do that. So you see, my sis works with a very very different world.

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Thank you CheshireCat for putting into clear wording what I was meaning.

Something that I thought about last night was how if something is learned for one thing it doesn't necessarily transfer to another. I wish I didn't suck at explaining things.

Like the first time I was told to "wash the beans" for dinner. I washed them like you wash dishes. Soap included. That made for a disaster and very much angered my mom. She incorrectly made the assumption that EVERYONE knew what and how to "wash beans".

A few weeks later I made the same mistake with potatoes. She was even more angry because it made no sense to her after the bean incident. But potatoes are not beans.

Then she got really mad when I asked why was the vein in her forehead poking out.

Dad got me out of the room very quick.

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Just wanted to say thanks for all the replies thus far...would love to hear from your sister, espresso, if she has the time and inclination to drop by, but understandable if she's too busy.

My info gathering usu. waits for weekends when I have larger chunks of uninterrupted time to devote to it so I don't really have anything to say (as yet) just a lot to look at, listen to, and think about. Wanted y'all to know I appreciate it, though, and still am reading ; )

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