To Treat Autism, Parents Take a Leap of Faith

[HuckleB]

To Treat Autism, Parents Take a Leap of Faith

http://www.nytimes.com/2004/12/27/health/27autism.html

"Desperate parents of autistic children have tried almost everything - hormone injections, exotic diets, faith healing - in the hope of finding a cure. But more than 60 years after it was first identified, autism remains mystifying and stubbornly difficult to treat. About the only thing parents, doctors and policy makers agree on is that the best chance for autistic children to develop social and language skills is to enroll them in some type of intensive behavioral therapy.

A government-appointed panel has endorsed such therapies, which can cost $40,000 to more than $60,000 per year. Parents fight to get their children placed in behavioral programs, encouraged by the claims of some therapists that they can produce astonishing improvement in up to 50 percent of cases. An estimated 141,000 children with autism receive special education services, in many cases including behavioral therapies, through public schools.

Yet the science behind behavioral treatments is modest at best. Researchers have published very few rigorously controlled studies of the therapies, and the results of those studies have been mixed. While some children thrive, even joining regular classrooms, the studies have found that most show moderate or little improvement. And researchers say most parents now experiment with so many alternative treatments - including vitamins, diets, sensory therapies and computer games - that they muddy the results of behavior treatment, making it very hard to say what is causing a child to gain skills or to decline.

The most recent analysis of treatment research, financed by the National Institutes of Health and scheduled to be published next year, concludes that although behavior treatments benefit many children, there is no evidence that any particular treatment leads to recovery. Doctors do not yet know how to predict which children will improve in the treatments, or even how treatable the condition is, the report concludes.

..."


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Not sure why, but there have been many pieces in the Times in recent weeks covering Autism.

[Not_Giving_Up]

1. What a lot of people fail to realize is...

ADHD falls on the autism spectrum. Parents of ADHD or ADD kids know this, and these articles get their attention for sure.

My son is ADHD and an Aspie (Asperger's Syndrome - high functioning autism), and I'm always out to learn more, so the articles catch my eye.

[HuckleB]

3. Huh?

Please show me the studies that show this. It's true that comorbidity may exist, but I'm not sure about your assertion as placing ADHD on the PDD spectrum.

Have you read the piece already?

[K8-EEE]

4. I Have Been Told By Some "Experts"

That autism is the severest ADD (or that ADD is the mildest form of autism, can't remember how they put it) and that ADD children respond favorably sometimes to treatment for autistics, including the horrible gluten/casein diet which didn't work for us but did help one child I know.

I take everything the so-called "experts" say with a grain of salt though.

[idiosyncratic]

8. Have you read "Thinking in Pictures" by Temple Grandin

I learned about her from one of Oliver Sacks' books.

Fascinating that one person with autism was able to become a college professor at Colorado State University.

[K8-EEE]

21. Thinking In Pictures Was The Best Thing I've Read

I can see my daughter thinking exactly in that way -- when you ask her something it's like she's rolling back a videotape in her head. I loved that book!

[DianeG5385]

26. I have to tell you, my son never forgets anything!

He's especially sneaky when he wants something and he's hard to fool. I have often said, he may be autistic but he's clever and has a mind like a steel trap, it's just that he can't communicate what he knows as the way his mind works is so different than ours. I have often thought that if we were stranded on a deserted island he would be far more likely to survive than me because he has certain skills I don't have.

[K8-EEE]

27. Yes!! My Daughter Also.

Exactly....there seem to be so many Auspies & parents of kids with ASD, probably enough for another DU forum!

[DianeG5385]

10. I tend to agree with this as my eldest daughter is ADD

And I have thought of my son who is autistic as on the far side of a scale. Diet may be part of it. I'm lucky that my son eats very well and is very healthy, many autistic kids have a very difficult time eating and can become malnourished. My son does have his favorites that's for sure especially Mac and Cheese or cheese basically in any form, bread etc. He is into carbs but eats meat and veggies well, kinda like a normal teenager. I haven't seen any evidence, however, that indicates a restrictive diet or supplements make any difference.

[phylny]

59. Lots of families I work with use a gluten-free diet

and they say it helps.

[DianeG5385]

63. I'm going to pursue this angle, I really haven't been that focused

on diet as he's a healthy eater. He has, however, developed acne and my daughter thinks that if you can't process sugar properly you get sorts of weird reactions (She's ADD and a "sugar spiller" (renal glycosuria)). It could be that I need to try a gluten free diet with him although he's definitely a carboholic! I would like to see if this could spur additional development on his part, and clear up those blackheads!

[phylny]

65. Good luck with it.

I think it's pretty challenging to do (GF diet), but with one boy I worked with in particular, the difference was amazing, and his mom manages to find good food without wheat and corn, etc.

WRT acne/pimples - two of my daughters have a prescription ointment (PM me if you're interested in finding out exactly what it is) - I think it's benzoyle (sp?) peroxide and an antibiotic mixed together. It doesn't hurt their skin at all, and their faces are clear and smooth when they use it. It's absolutely amazing (only downfall is it needs to be refrigerated). Our insurance even covers it.

[K8-EEE]

70. I Know ONE Kid That This Helped

And many others (like mine) that it was just one more added stress. The GFCF contingent will tell you that she likes cheerios, spaghetti, pizza, pancakes etc. only because she is "addicted" etc., in reality most kids like those foods!! They like cheerios with milk rather than GF/CF cardboard cereal and rice milk. God, who the hell wouldn't?

The only GFCF products I found that were actually good were brownie mix and pancake mix from Whole Foods. Other than that she lived on meat, potatoes, rice, fruit (they start telling you grapes, potatoes, citrus & tons of other stuff isn't OK if the GFCF itself doesn't work. The more extensive autism diet had my daughter looking like she was starving, her clothes falling off.)

I finally went, oh FUCK THIS when she started picking up stuff off the ground and eating it, a habit it took a long time to get her to quit even after we quit the GFCF.

I'm only telling you the "con" part of the diet because they won't!! I do hope you try it (anything is worth a try) and that it works for you.

[HuckleB]

73. The problem with these statements by "experts"...

is that the most proven treatments for true ADHD typically do not work for a child with Autism.

There is a great deal of overlap regarding many psychiatric/developmental diagnoses, and some treatments will work for some individuals with various symptoms, however, there is definitely a great deal of difference in the parts of the brain affected in Autism and ADHD, from what we now know, which, granted, is not much. Still, there is no way to scientifically justify a claim that ADHD falls on the PDD Spectrum.

[proud2BlibKansan]

15. I think they are confused

both ADD and Autism are thought to be language based disorders. And there IS comorbidity, but they aren't on the same spectrum, to the best of my knowledge.

[K8-EEE]

22. No, Not Necesarily "Language Based" More "Communication"

Some Auspie kids have total command of the language but fail to pick up on what we call "social cues.." non-verbal communication, this puts them squarely in the "abuse me" category, sadly, especially in middle school where for most kids conformity is the name of the game.

There are about a thousand non-verbal communications we give and receive every day -- just subtle ways you would tell some one "ask me out I'll say yes" or "don't even try it" or "ahem, get out of my space" talk to me, don't talk to me they just don't get any of that no matter how excellent their language skills are. And some are gifted in that way -- speak many languages but are autistic in a social/communication sense.

[derby378]

23. Are you sure ADHD isn't neurologic?

That's my understanding - the most likely culprit seems to be a malfunction in the way the brain processes dopamine. It's an overabundance of dopamine transporter genes - a similar syndrome has also been observed in primates like gorillas and chimpanzees.

[proud2BlibKansan]

28. The last research I read said

both are disorders of the language center of the brain.

[genieroze]

11. I didn't know that, my son has ADHD. eom

[bleedingheart]

2. there is no cure for autism....but therapy can make it easier for the

child to live with it.

My son has Asperger's. The therapy works for him but he is not as severe as some children. We don't medicate but eventually he may have to for depression which we can not battle so far with therapy alone...but we keep trying.

[Ian David]

6. More info on Autism

Misconceptions about Immunization
Misconception #11
Thimerosal Causes Autism: Chelation Therapy Can Cure It

A few physicians have been promoting the idea that the mercury content of vaccines is a cause of autism and that autistic children should undergo chelation therapy to be detoxified. Lawsuits have been filed, and several attorneys are advertising on the Internet for more clients. The situation arose because until recently, certain vaccines contained thimerosal, a mercury-containing preservative that is no longer used in tmost of the vaccines not recommended for children. However, there are several reasons why concerns about the use of thimerosal in vaccines are misguided:
<snip>
The use of chelation therapy to treat autistic children is completely bogus. One lawsuit has been filed by parents who believe they were victimized in this way <7>.
Barrett S. Edelson Center sued for fraud and malpractice. Quackwatch, Nov 28, 2001.http://www.quackwatch.org/11Ind/edelson.html

http://www.quackwatch.org/03HealthPromotion/immu/thimerosal.html

---
Autism is a merciless mental illness
http://www.acsu.buffalo.edu/~insrisg/nature/nw01/0108autism.html

---

And here is a highly speculative (but fascinating) hypothesis about the nature and origins of Autism:
The Geek Syndrome

Autism - and its milder cousin Asperger's syndrome - is surging among the children of Silicon Valley. Are math-and-tech genes to blame?
http://www.wired.com/wired/archive/9.12/aspergers_pr.html

[bleedingheart]

13. my husband and I are both geeks...when our son was little

my sister gave me that article when she was concerned about certain aspects of our son's interaction with others..or lack thereof...

(sis is a nurse)

[idiosyncratic]

31. Don't believe everything you read on Quackwatch.org!

From personal experience, I can tell you that some of their information is either opinion, or based on what AMA-indoctrinated doctors believe, and flat out wrong!

Some doctors won't listen to the actual symptoms patients describe, if it differs from the "party line" according to the AMA.

[DianeG5385]

14. Depression and anxiety is not unusual

My son can be very anxious in certain circumstances and medication has crossed my mind. I have avoided it so far but there may come a day that it will be necessary.

[SheilaT]

5. Another parent of an Asperger's son here.

Last night I got into the most incredible discussion with a woman who thought I shouldn't use the word "deficit" to describe his lack of social interaction (I said that Asperger's is a form of autism characterized by social deficits) and it was totally enraging. She does a lot of diversity work and so she is of the opinion that there's nothing really wrong with my kid, but he's simply different and our society needs to adjust to him.

Well, he's a great kid, smart, funny, but he absolutely has social deficits. He does not understand many basic social interactions, and to expect that our culture needs to adapt to him, to do this touch-feely thing of everyone is wonderful and needs to be cherished just doesn't acknowledge the real world that he has to live in.

There are no magic cures for any form of autism. Where a person is along the autism spectrum makes a huge difference in how well that person can ultimately learn to cope with the real world.

[Ian David]

7. When I was substitute teaching, I had a great Aspergers kid

One of the kids in the gifted class I was teaching had Aspergers Syndrome. I was briefed about him before the class, so I kind of knew what to expect.

He was a very sweet, very smart kid. He spoke differently-- very much like the little boy with the backpack character on Kids in the Hall.

The only real "social deficit" I noticed in my very short time with him was that whenever he had a question or wanted to tell me something, he would get up out of his seat to come talk to me.

[WHAT]

68. I knew twin boys, one gifted, the other autistic...

this was in the early 80's and the boys were about 10. They were fraternal twins and at the time I met them I wondered if there was a connection...genetic correlation...in the wiring. The one boy was in the gifted program at school and the other in special ed...they were both "special". I knew the mother in a casual way and she said the one boy was not diagnosed until he was older but as an infant he would rock rythmicaly, sometimes even banging his head and hurting himself. Once the mother had a diagnosis, she was able to help the autistic boy more but it was the gifted brother that was able to cue-in on the behaviour and helped manage it. The autistic boy improved with his gifted brother's understanding.

I find this area fascinating because of this connection. I also tend to be skeptical about theories involving environmental factories, mercury poisoning, etc. because these boys were not ever seperated from gestation on.

I think everyone would benefit by a scientific explanation/diagnosis with this whole cluster of traits. I wish these boys could have been in some type of research...they'd be in thier early 30's now.

[bleedingheart]

16. was Christmas torturous for your son??

my son gets so stress out by the hyper atmosphere of the holidays and the presents thing isn't so appealing either for him...

[DianeG5385]

19. What stresses my son out the most is loud conversation

Christmas was just fine for him because he totally got into the gift giving part. You should have seen his face when he got a new jacket from his older cousin. Oh my God! You would have thought its was gold! His expression was an incredibly honest portrayal of his happiness and amazing to see! He scored cool stuff. He loves gizmos and musical toys and puzzles so he got alot of that.

HOWEVER, when me and my chatty sisters get going (we talk fast) he tends to hoot a little in objection. I am not sure why, but I think it's related to him being unable to process quickly what we say so he can follow. What helps in these circumstances is that he'll turn on his music and soothe himself, kinda like white noise.

It is definitely harder on autistic kids but since he's familiar with his large family, he usually recites a list of whos coming, such as Auntie Gail coming? Sonia coming? Kevin coming? etc. He likes to have his people accounted for.

I wish I could figure out how to post a pic...He's a cutie pie!

[SheilaT]

39. My son has no problem with

Christmas, perhaps because we don't make a huge big deal out of it in this family, although we do exchange gifts. This is the third year in a row that I didn't bother with putting up a tree or any decorations, and it's quite liberating.

My son is also 22, and the current ongoing problem with him is to get him to communicate with us while he's away at school so that we can make sure he gets the support he needs and completes his classes. He has already flunked out of one college because he has enormous difficulty asking for help when he runs into academic difficulty.

He's one of those who's brilliant at science, is currently in the engineering program at Kansas State University, loves living on campus, and I just hope he can finish school and get a job and live on his own some day.

He's not as bad off as lots of kids with Asperger's.

Temple Grandin is not really the best of role models, as what she has accomplished is far beyond what many autistic people are going to be able to do. It really bothers me when she's held up as something to aspire to.

[Zynx]

57. Have Aspergers - *is* most certainly a social handicap

Some of the other things I can do are quite incredible and I would not trade them away (shockingly intelligent, amazing memory for material and detail), but social situations for me border somewhere between uncomfortable and miserable. I'm normal enough that people who don't know me don't suspect there is anything wrong, which also creates a few problems. They think I'm being a wall flower or a jerk when I really just don't know how to go up to someone and talk to them, etc.

As far as trying to "cure" it as described in the top post, I would say that borders on child abuse.

[Mr_Spock]

69. Hehe - reminds me of how many cool excuses I have

I now "condition" people so they know that I am expected to be "in my own world" at times. I've made it a kinda game for me.

[DianeG5385]

9. My son is autistic, he's 13, and a love!

It took ALOT of structure and therapy to get him here, he used to be aggressive and an eloper but with maturity he has calmed down alot!

I have avoided all quack cures as I don't believe there is a miracle cure. I also don't want to medicate him (for my or the teacher's convenience) because I believe medications will retard his development. Many disagree with me on this but I am doing what I believe is best for my son.

He is funny, hansome, loves to be goofy and LOVES music! His brother and sis love him as does anyone who spends any time with him! Seeing how good he is doing now, including a significant verbal increase I think a well structured, loving environment is best. His dog Scout is a loyal companion and Lawrence is HIS caretaker ( Lawrence calls him "Scooty"). I think he is very proud of this as he is of his chores like taking out the trash and bringing in the groceries. He even holds the door for me when we get home! AND his room is so neat compared to his brothers pit! He's alot like the "Rainman" but so far has not exhibited a spectacular talent. The thing is, there is so much about him that is very clever and intuitive that I suspect he has hidden talents we don't know about.

Autistic kids are anxious people who need total structure and predictability. Every day he repeats what his routine will be and seeks validation so he can predict his day. Change is difficult without alot of pre-planning. (But hey! I hate change too so I try to think of it in that context, only more extreme). All that being said, I am lucky to have a healthy, loving son. ( when I say, "I love you" he says "I love you too me")

I try not to focus on "what would have been" if he were not autistic (he is profoundly so), I see his smart funny and handsome brother and occasionally have these fleeting thoughts...they are selfish. I remember that it's his tragedy, not mine. Making it "all about me" is insulting! I hope that grieving parents of autistic kids who cannot accept this find peace and help their kids be the best they can be and stop seeking the impossible especially with regard to profoundly autistic kids. Focus on making their lives as happy and complete as possible within the constraints of their disability. High functioning autistic kids are another story.

[earth mom]

25. My son is autistic and is a love too!

Dh and I love him as he is and wouldn't change a thing about him now! He's almost 10, and while it was rough at first, the GFCF diet plus ABA have worked wonders for him. The diet is hard but we never gave up on it and he's been on it almost 5 years now. He had ABA for 3 years which helped with his behaviors and also his ability to focus. And you said it DianeG5385-stucture, a loving environment and acceptance are key. We take it one day at a time and celebrate every inch of progress. But we don't sit around mourning the loss of anything-what's the point in that?! We accept him for who he is and he's a happy and loving kid because of it.

I met another parent recently who was practically boiling over with anger over his sons condition. I asked him if played golf as he was wearing a jacket with a golf insignia on it and he said "no, not anymore!" in a harsh tone. Later as we discussed our sons he told me that his son spends 3 or 4 hours daily on breaks and over the summer months not on ABA but on academic pursuits. I was floored. Because mind you neither of our boys have aspergers but just have plain old autism to differing degrees. My son is a bit more higher functioning than his because he is much more verbal and is able to communicate. However, his son is a couple of years younger and may possibly progress to my sons level. Our sons share the same special ed teacher and when I told this parent that the teacher had told me and dh to just let our son be a kid and to most of all to enjoy him for who he is-this parent looked at me and in a furious tone of voice said "it's important to us that our son is able to achieve and progress academically!" Sorry, but his ideas sound like militant boot camp to me, and I was stunned by his attitude from start to finish. While I would never say to any parent that it's "my way or the highway", this attitude to me was absolutely the wrong way to go about helping any kid with autism. The last thing you do is push these kids in directions that they themselves aren't interested in. Even ABA is a gentle prodding to improve behavior, not some extreme mind bending exercise!

Love em, guide em, but let them be who they are!

[DianeG5385]

29. Wow! Let me tell you something interesting

That fellow is an example of feeling personal inadequacy due to his child's autism. I am a believer in a structured educational program but not for my personal benefit, for my son's education. My recommendation is that he get his butt to the golf-course and stop using his child as an excuse!!! He needs to accept his son and he will be at peace.

My son was a "normal" toddler who "disappeared" when he was about 16 months old. He began exhibiting strange behaviors, walking on tip toe in circles and immense anxiety. He was diagnosed just before his second birthday and was in early intervention pre-school by the time he was three. He was in regular pre-school as well, until he just got too big for the toddlers (he's a big guy).

When I say he disappeared, I mean he became completely mute, no eye contact and zero social interaction. This was the absolute worst as he also was an eloper and had Pica. I had motion detectors on the doors but he still managed to sneak out. It was horrifying! I was constantly afraid to sleep that something horrible would happen to him.

In his school, they could not get him to participate in anything at all so they let him sit by himself and he began to use aggression as a tactic to get people to leave him alone. This was not acceptable as my feeling was that he HAD to be part of the circle and he had to follow the rules. By letting him do what he wanted they did him a great disservice as this is when autistic kids feel most out of control. His first IEP was basically keep him safe and don't let him eat wallboard!

We changed teachers and I told them don't be afraid to be firm and give him a schedule. He needs to know who's in charge. It took until he was nine for him to slowly rejoin us. It was a combination of getting him on a schedule, a love affair with his speech teacher (his first crush). With his increased verbal ability came an ability to communicate his needs something which made him frustrated and angry. I would say show me when he couldn't articulate. That helped. He now can read simple books, do his math, make change, go shopping on and on! And he is so proud! He will never be a rocket scientist but he'll be a happy and proud person!

[SheilaT]

40. What do you mean by an eloper?

The only meaning I know for that word is to run away and get married, and I strongly suspect he's not in the habit of doing that!

[DianeG5385]

44. That's exactly what it means except for the marriage part

LOL! Although it wasn't funny at the time. He developed ingenious ways of sneaking out of the house in spite of double dead bolts and motion detectors. He did this at home and at school. It's been about three years since he tried, I think he's lost the impulse. He was well known as autistic by the local police who still eyed me suspiciously when I called 911 and they picked him up. The most outrageous example was when he ran from the classroom and no-one could find him, we were in a panic. They called out a Sherrifs helicopter and in a sort of black comedy you heard over the police radio..."we got him" when he was located. I called him my little perp. for a while. It was amazingly scary and I am sooo thankful he doesn't elope anymore.

[SheilaT]

48. Omigod!

What a terrifying thing to live with!

My younger, non-autistic son used to slip away from me at stores and the like, and I'd have to search for him which wasn't fun.

One time at a Sears, he'd wandered away, and I went to the office and asked them to put out a "Has anyone seen" announcement over the PA, which they really did not want to do. They wanted to page him by name, but I pointed out he was only three and I really doubted he'd respond. They hadn't even completed the announcement when three women showed up to tell my my son was sound asleep on a pile of rugs, and they'd been keeping an eye on him, figuring his mother would show up eventually.

[missingthebigdog]

50. I have an eloper as well!

My youngest daughter, who is now ten, was nearly impossible to keep in the house. She disabled alarms, broke windows, tricked her siblings, whatever it took to get out. We had some very scary incidents before she finally stopped. We would call 911, and the police would pick her up and take her to the convenience store so we could meet them there. Invariably, they bought her pop and candy, so she now thinks police cars are roving candy attainment vehicles, and approaches them in parking lots.

Three of our four children are autistic. I have an almost 13 year old son, and 10 and 11 year old daughters. Our son is less severe, and mostly has issues with perseveration. He is extremely bright and loving. Our middle daughter has very strong social skills, but continues to have language difficulties. She has a broad vocabulary, but has problems carrying on a conversation, especially if she is frustrated. My youngest daughter, the eloper, is severely autistic. She is nonverbal and self injurious. It is a constant battle to keep her safe and get her the things she needs. She is often aggressive, and we bear the brunt of that. She can also be affectionate and loving, though, and we are encouraged by any small amount of progress she makes.

Having these kids is difficult and exhausting. It is very hard to make people understand their behaviors, but we think it is wrong to isolate them from society, so they go where we go. I had some cards made to hand out to strangers who are curious about their behaviors or who witness a meltdown. It seems to help a bit. . . .

I am amazed to find so many others here with autistic kids. I know the incidence is increasing, but it is still relatively uncommon for me to run into another parent. Glad to meet you all!

[DianeG5385]

51. My son wiggled out a second story window one rainy night

You know the little window above the shower? Who would've thunk of that one??? only an autistic child, of course! I was downstairs thinking he was asleep (they are very tricky with the fake sleep thing) and I heard a thump on the side of the house I looked out and there he was stunned by the fall. He could have been killed but he landed on his butt on pine needles. I took him to emergency and all he had was a deep bruise in the buttock. He walked with a stoop for a week or so. By the way, it IS tough and no one but another parent in a similar situation can relate. I don't usually go to autism forums so this is nice!

[phylny]

60. I work with many children with autism, and their families.

I wouldn't be so harsh as to say the father feels personal inadequacy. He's probably just mourning what he perceives to be the loss of his son, and feels that any time not spent in therapy is "wasted" time.

I have nothing but compassion for such folks.

[DianeG5385]

64. I agree I may have sounded "harsh" but from a good place

I understand his grief that he has to lower his expectations for his son, but my main point is that he can't sacrifice everything for his son and I think the best therapy for him would be to get back out on the golf course! But again, maybe his best therapy is doing everything possible for his son. Maybe he should take his son golfing and damn the comments! Let 'em play through!

[phylny]

67. I understand, and I agree with you.

It's difficult from my perspective (SLP who also has done ABA and AVB) because I, too, think a child needs to be a child, and that parents need to live their lives as much as possible.

We've had so many parents who drill their kids 365 days a year for 7-8 hours a day, and when I was in the school system, they'd become furious if we suggested backing off some during the summer, or on the weekends.

I know that in many cases, they believed (because some consultant, or Vince Carbone led them to believe) that their child would be "cured" of autism if they had X hours of therapy week.

I always appreoached this type of parent gently, because I knew that they loved their child more than anything, and they only wanted what they thought was best. Many of them see the clock ticking, their child getting older, and they fear that they might miss something, anything, that may have helped their child.

Having said all that, my clients of choice are children with autism :)

[DianeG5385]

71. You seem like a caring empathetic professional

I have had various teachers for my son, some excellent, some not so good. I have to tell you, that for the last five years, they have been excellent! He was in the {"Stars") program for two years. This last year he moved to middle school and has continued his Edmark program with the help of my niece, who is his classroom aide and knows him inside and out! She knows his need for structure and having been through the Stars program with him for two years actually trained his latest teacher on the best way to work with him. He LOVES being a student doing his tasks on his chart,and is progressing!

He also loves his current speech therapist, the one before could not get through to him and Lawrence lashed out violently and refused to work with her. His adaptive PE teacher has worked with him for years. He has been in the same school system for 10 years and teachers and therapists who have known him since he was 3 are astounded at how far he has come! This makes me feel like his program is working for him.

I am a professional who works full-time and believe that this is best for him and me. I have crafted a set up so that he is NEVER without a support person who knows him well, be it a babysitter, a relative or after-school day-care for disabled kids. I think it is important for him to have his own life, his own interactions without ma hovering over him all the time and when he does something cool at school we tell him how great he is! He's very shy and blushes!

[davekriss]

36. My Two Gifts from God

I adopted two girls, siblings, when they were 1 and 3. Today they're 11 and 13 and both are doing well. The youngest (S) is autistic; the oldest (C) is early-onset/rapid cycling bipolar disordered/ADHD. Yes, we have our hands (very) full!

S didn't speak until she was 5. I knew we had a problem at 1 as, when you stared into her eyes, it appeared no one was home; there was none of the parent-child interaction you'd expect from the non-autistic.

The early years were very tough as she would scream, rage, hit, bite, and pull hair to get her needs met. And there were oddities: She would take books, sometimes my very expensive art books, and tear them into tiny little triangles of confetti. You'd walk in her room and her clothes would be all over the floor, but if you opened her drawers you'd find confetti three or four inches deep!

She exhibited delayed echolalia, which means she would learn by rote melodic strings of words and apply them until string x got her fed, string y got her a hug, etc. The strings would be something like "open the yellow umbrella!" -- the words meant nothing to her, but she found success in the vocalization. She has language now, but to this day she can pick up a song after hearing it once, hum it back to you, and work out the fingering on a piano. And her voice is pure sunlight! We're hoping these talents become a strength for her.

Kriss, my wife, studied behavior therapies at the Judevine Center for Autism and, after years of applying various techniques, S is doing well. She is mainstreamed in public school (though she has an aid by her side most of the time), doing about average academically, and is well liked by everyone. However, I've heard autism described as the "aloneness disease" -- S appears very content to play by herself completely alone for days at a time. But she has friends, and this is good.

Now her older sister, C -- boy do we have our hands full here! C has early-onset/rapid-cycling bipolar disorder type I with a comorbid ADHD dx to boot! She's been hospitalized 21 months since 2001 (post September 11). She's 13 now and our "care team" tells us we can expect a rocky road ahead as adolesence obsoletes the various pharma cocktails as the brain chemistry changes. O fun!

Since this thread is about autism I'll spare you the details of C's bp dx, except to say if you looked up the symptoms of the disease C has exhibited them all, even the rare and extreme symptoms. We've had doctors tell us to abandon her to residential care and throw away the key (we fired them on the spot!). Progress has been made, then lost, then made... it is a continuous struggle. But we're winning!

Note these girls are siblings. One is autistic, the other bipolar/ADHD. The birth father's family, it turns out, is filled almost to the person and for several generations with autism, ADD, ADHD, bipolar disorder, schizo-affective disorder, and schizophrenia. The birth mom's family has one instance of borderline personality disorder and some mood disorders (anxiety). Given the range here, it does seem ADD, ADHD, bipolar, and even schizophrenia could be a continuum and not isolated, separate diseases. How else could all these diseases collect in one family tree (birth father) if there wasn't an underlying continuum at the base?

The kids are part of a decades long longitudal study, so if there is anything to mine here the "profession" is on it.

[DianeG5385]

41. You and your wife are terrific for adopting the girls!

My son's speech is more an issue of articulation and repetition. He has the words, but can't them out clearly or in the right order. His speech is difficult to understand unless you know him well. This causes him great frustration, but I let him repeat for a while until I understand and failing that, ask him to show me. His receptive language is much higher.

When he was little, I had alot of the same issues re: aggression until he became more verbal. I had knots on my shins, especially when we went to the store and he wanted something I didn't want to buy. I just gritted my teeth and didn't give in. Believe me, he gets lots of stuff but it is so important to say no and set limits. They need that.

In school, he likes his lessons and at 13 is operating at about the first grade level academically. In many other ways he's a typical teenage boy. While he can be loving, he generally wants to do his own thing and while friendly has no what you could call close friends. We have a large family so he does not lack for interaction. We do our best to treat him like a normal guy, we have expectations on behavior, rules and he goes everywhere with us which is why I think he is able to maintain reasonably well in public.

I have been very fortunate that he doesn't require medication. I know what it's like to have an autistic child with other associated disorders. For a while, I babysat one of Lawrence's classmates who was profoundly disturbed and inconsolable. He was very tall and moaned and cried it was painful not to be able to get through to him. He was also very aggressive and actually broke my car windshield in frustration. It became too much to watch him and Lawrence although miraculously enough Lawrence was always "mr. perfect" when I babysat, almost like he knew I could only handle so much.

I am proud of you for not institutionalizing your daughter or putting her in a group home, although for some it may be the only option, it is definitely not for me. I can't think of a better place for my son than with me. I would worry too much that no-one could care for him like me. Since he's 13, we are beginning to look at vocational training, focusing on his skill such as organizing and sorting, to see if he can hold some sort of job or workshop sort of thing as an adult. I think that'll be good for his sense of self.

Anyway, it has been great talking on this thread, and sobering to see how many of us are in the same spot.

[newsguyatl]

42. what a beautiful post

brought me to tears.

my little brother, too, is autistic, and he is the love of my life.

[DianeG5385]

12. My biggest concern is the explosion in autism

I wonder about an environmental impact, mercury in vaccinations, etc. since it seems that the significant increase has occurred in the last 15 years. My son is 13 and I don't know when they started using mercury as a preservative. Could it have been around then? He's my youngest. I have to say I was pissed when the Gov't limited the ability to sue the Pharmas not like I'm the suing type but what gives??? (guilty conscience?). With eyes closed, and with a gov't unwilling to stand up for its citizens we may never know the cause and that sucks.

[proud2BlibKansan]

17. I think eventually we will know

what is causing the rise in Autism. There are studies going on all over the world. The most popular hypothesis is a vaccine but they haven't been able to prove it scientifically yet. I certainly hope that finding the cause will lead to a cure or better treatment.

[Ian David]

18. The Autism "epidemic"

This article:
Wired 9.12: The Geek Syndrome
http://www.wired.com/wired/archive/9.12/aspergers_pr.html

Speculates that Autism and ADHD are conditions on a single spectrum, and caused by "The Geek Gene." In short, we now live in a society where nerdy math and science geeks are reproducing with one another and passing along genes to their offspring that result in autism.

See also:

BBC NEWS | Health | Autism link to 'geek genes'
http://news.bbc.co.uk/1/hi/health/2192611.stm

TIME Magazine: The Secrets of Autism
http://www.time.com/time/covers/1101020506/scautism.html

[DianeG5385]

20. I don't think I buy this even though I'm a geek

I think more likely, it is geeky parents that are out there looking for answers and making alot of noise because they have the wherewithal to do so. I will admit I haven't read the article, this is just my initial reaction. I'll read and post if I change my mind.

[phylny]

61. I'm not so sure

I work with lots of autistic children, and many times (though not EVERY TIME!) when I meet one parent or the other, I can see tendencies or traits that I see in the autistic child.

So, I think it's possible that there is a "geek" gene. I also think these kids are like canaries in a coal mine - there's a genetic predisposition to being autistic, and something in the environment is setting them off. I think it's only a matter of time when more and more people are affected by whatever it is.

As a speech-language pathologist, the thing that disturbs me most of all is the toys that I see children with nowadays. No building toys, not much that they can do make-believe in, but Leap Frog and other toys that are "push the button and you will be entertained." The kids I know with autism (young ones) are simply awestruck by them, and the toys enable them to retreat further into themselves with no detriment, since they're able to relate to the toy.

I was singlehandedly responsible for removing those types of toys from one of the autism classrooms in my former school district.

[DianeG5385]

24. However, let me relate an interesting conversation I had

with my daughter and her husband. They are both ADD, but their son has every indication of being a little wizard. He's walking and not a year old til Jan 3, verbal (ma, da, cat(although the cats don't appreciate it!)) socially adept, loves to wrestle (!) by diving on his older cousins, watches everything and has a sense of humor. She was at her Dad's for Christmas Eve and her Dad said he looks like a smart one. So they both said, interestingly enough that they both felt they didn't get the smart genes even though on both sides they have super smart people. My daughter's Dad and I are both geeks as are his brothers. They feel like they didn't get the smarts (I disagree, I just think they have a different king of smart)but their son did. So who knows? Maybe there's something to it.

[happyslug]

33. I always wonders how ancient people knew so much about their environment.

The time to study a plant or animal is so time consuming that prior to the 1800s it was unheard of. People wrote up about plants they founds, drew them, but little long term study of such plants and animals from the Scientific community. Yet somehow most people know of the plants and animals in their regions, even plants and animals they had no interest in for purposes of food, clothing or other commercial purpose.

SOMEONE had had to study these animals and plants, and apparently that were people who were Autistic. Such information is important to understand one place in any environment and thus once the information was obtain, society retained it. My point is that is takes someone with the obsession of an autistic person to STUDY these animals and plants. Thus such Autistic people have been with us forever just NOT acknowledged.

[bleedingheart]

37. ding diing ding!!! we have a winner

those autistics that are high functioning have been able to blend into society because the did jobs that other people would find immensely boring and in a way they had a value to society and were accepted. I bet Newton was an Aspie..

[cornermouse]

47. Could it have been around then?

No. I have a 23 year old and a 25 year old.

[KingChicken]

30. Autism, interesting subject....

Too much information, really seems like autism is really an inability to separate information into working units. I myself go nuts when I hear and see more than a few things at once, I have a poor ability to numb my mind to "noise", I see, hear, and feel almost everything that's going on around me. Most people automatically block out the noise, things that you never even notice.

I often find myself noticing and remembering almost every obscure fact of a situation, including sounds, sights, and feelings. It's too much to handle sometimes, you can't reconstruct all this massive information to mean anything quick enough. I really think a lot of people have varying levels of this, autistic people have it really bad, others not so bad.

[newsguyatl]

43. very interesting insight.

thanks for your post.

[idiosyncratic]

32. Anyone see the special about "Refrigerator Mothers?"

It was on PBS a while back. I was so sad for those mothers who were blamed for their child's autism. One mother's child was born in the late 60's or early 70's and they were still using that line on her.

These mothers suffered so much because the doctors blamed them. :cry:

Part of the "theory" had to do with both parents being white, upper-middle class, and intelligent.

Therefore, the African-American woman, whose son was autistic, was denied a proper diagnosis for years. As was the Latina woman.

The Medical Profession has sure believed some lousy crap through the years!!!

[David Zephyr]

34. Autism is Epidemic Now In America and the Government Is Hiding It.

How many of you know new parents who are just discovering this about their beloved children?

I won't be surprised if a lot of you weigh in saying you've noticed this also.

I'm telling you, it is epidemic in America (not epidemic in terms of contagion, but in terms of increased numbers) and I believe that it is purely environmental and, in many cases, the result of pharmaceutical companies peddling poisons to expectant mothers.

Two of my employees are dealing with this very issue now and there are so few places for moms and dads to turn.

What is our government hiding? Who are they protecting?

[K8-EEE]

53. I Met A Dr. Who Claims Autism Is Mercury Poisoning

and that the studies that need to be done to prove this will never be done, for political reasons.

[David Zephyr]

54. Here's Something That Should Make Everyone's Blood Boil

I just figure that everyone here at the DU knows these things when many are new here and others are just getting into understanding the great class struggle we face.

In any event, here is the truth about Eli Lilly, George H. Bush's former employer, and its contribution to Autism and how Senator Bill Frist of Tennessee used the Homeland Security Bill to protect one of the GOP's biggest financial supporters.

Read and weep: http://www.rense.com/general32/eli.htm

[Deja Q]

35. Let people be people; enough of using drugs or gimmicks to make them into

something YOU want.

Those with autism are not diseased. Our "society" is the one diseased.

[cornermouse]

49. Our society has problems, unfortunately the disabled

have to take to brunt of their dislike and intolerance.

[DianeG5385]

55. I love him just the way he is

But anyone with an autistic child will tell you they would prefer they were not autistic. It is a difficult way to be, and while I hear where you're coming from relative to letting them be, you can't just let them be. It's harder to educate them, but possible, to a degree. The myth of the savant makes unknowledgable people do strange things. It is not uncommon for a well meaning person to try to "make contact" with Lawrence, e.g. cure him, or give me a novel that portays a genius autistic person who solves some major computer puzzle and saves the world etc. etc. and to ascribe some skill that he does not possess. They are absolutely fascinated by him, and it comes from a good place, but it is not reality.

[K8-EEE]

56. Trying To "Fix" The Things That Bother HER, Not US...

I did do a lot of therapy some of which worked and some didn't, lots of snake oil out there for autism. One thing that people have told me is a crock but it really helped has been the AIT thing -- earphone therapy twice a day that helped her "tune out" some of her hyper sensitive hearing. After doing this she could go to the beach without wailing and putting both hands over here ears, in fact she now LOVES the beach and she started to have a lot more receptive language. Of course it could have been a coincidence, she could have made those leaps anyway, I'll never really know.

[DianeG5385]

58. I've heard something about this

and I should check it out for Lawrence.

[K8-EEE]

66. Interesting Books RE: AIT

The mom involved, she wrote a book called "Dancing in the Rain" about (from her perspective) curing autism with this treatment.

Years later her daughter Georgiana wrote an autobiography and it's obvious reading it that she's an autistic woman, still. She's a happily married, successful (art career) mom and still has autism.

email me if you want more info about these books, the last names evade me but I have them in my bookcase and would look it up for whoever is interested.

Myself, I do not think this is a cure; but it helps one of the more unpleasant conditions that may people with autism have, which is hyper sensitive hearing. When that is better, it's more comfortable for them to process sounds, including language.

[phylny]

62. A former neighbor of mine had a child who was

hyperlexic, and she did AIT in the midwest. After his treatment, the child improved language immensely, and was not as sensitive to sounds (wasn't afraid of the vacuum, or a balloon).

I think it can work for many children, but last I heard, it was expensive.

[Ilsa]

38. My son has PDD and he's being treated for

anxiety, OCD, ADHD, aggression, and I can't think what else. It's a real mess. I wish they could figure it out.

[cornermouse]

45. Autism is becoming more common.

If you check out the school's special ed. departments, you'll find the incidence of autism has risen. Personally, I think its either due to the childhood immunization shots or its environmental in origin.

[marew]

46. My fiance's neighbor, I believe, is an adult Asbergers.

He is 41 and lives with his mother. This guy is brilliant. He has a Ph.D. in physics and is a really nice guy. He does not get the subtleties of interpersonal communication (but is never inappropriate) and, when he gets frustrated, he flails and emits a high pitched sound more like an individual who has more severe autism. The sad thing is he can't get a job. I really feel for him. He obviously has abilities and talents that are not being tapped and I bet he would do a super job in the right setting. (We all need the "right" setting in our work where our own specific skills can be utilized best.) We need to look at a person's abilities, not disabilities. I am sure, with his unique qualities and awareness, he could bring to the field of physics something different, and maybe better, than the rest of us who have more typical interpersonal and academic skills can contribute. At least he should be afforded the opportunity.

[DianeG5385]

52. Isn't it interesting how we "feel" their needs?

So many of the posts on this board show that parents of autistic and PDD kids can just about read their minds? Or can feel what they need? There may be another level of communication that we in our every day lives are unaware of. It's like autistic people exhibit extremes of human behaviors or deficits of certain elements. It's such a puzzle! We caretakers seem to know for the most part how to meet their needs.

[DianeG5385]

72. deleted

[HysteryDiagnosis]

74. Resources

Many things autism related involve immune system anomalies, digestive disorders, liver weakness and on. Too bad this simple info isn't offered to parents who are searching for help. I have a rather extensive file on the immune system somewhere and its potential involvement in many cases of autism... if only I can get the old windows machine fired up and search for it....

www.hriptc.org

http://www.autism.org/vitb6.html
All 18 studies known to me in which vitamin B6 has been evaluated as a treatment for autistic children have provided positive results. This is a rather remarkable record, since the many drugs that have been evaluated as treatments for autism have produced very inconsistent results. If a drug shows positive results in about half of the evaluation studies, it is considered a success and the drug is then advocated for use with autistic patients. However, despite the remarkably consistent findings in the research on the use of vitamin B6 in the treatment of autism, and despite its being immeasurably safer than any of the drugs used for autistic children, there are at present very few practitioners who use it or advocate its use in the treatment of autism.

Dairy and autism:
http://www.amazon.com/exec/obidos/tg/detail/-/0671632655/qid=1104368899/sr=8-1/ref=sr_8_xs_ap_i1_xgl14/104-7387774-0284724?v=glance&s=books&n=507846

From Publishers Weekly
When Callahan's son Tony was diagnosed as autistic at age two, she struggled to understand the conditionabout which little is knownand worked tirelessly to help him improve. Her story takes us through Tony's early years, which included many bouts of screaming for nine hours at a time, head-banging, staring and generally nonresponsive behavior. This account about raising a difficult handicapped child stands out because of its honesty in discussing often ugly feelings. Callahan and her husband experienced extreme guilt, anger and shame, and for one harrowing moment they contemplated killing the boy. By age five, Tony began leading a normal life, and Callahan, a registered nurse, came to believe that a cerebral allergy to cow's milk may have caused Tony's autistic behavior and may account for autism in others. First serial to Ladies' Home Journal.
Copyright 1987 Reed Business Information, Inc.