Do you know something about autism?

[tillymarigold]

I know a guy with Asperger's syndrome, aka high functioning autism, and have read a couple of books on how Aspies cope with the world.

As was mentioned, there is a spectrum of levels and types of autism. If he has high functioning autism, Aspies can live relatively normal and productive lives. Aspies have difficulty interacting with other people because they can't read emotions and do not know how to show emotion. Many Aspies have taught themselves how to read other peoples emotions, how to react to those emotions, and how to express emotions -- they are acting when they appear to show emotion. Aspies can excel in certain professions, and some number of "geeks" are Aspies.

I just want to speak up on behalf of adults with Asperger's (like my fabulous and wonderful husband) ... while to some extent the way they *show* emotion is "acting," that doesn't mean that they don't *feel* the emotion, because they do (I know you didn't say that, but it's a common misperception). It's like ... let's say that for whatever reason, you'd never smiled in your life. You felt happy sometimes, you just didn't smile when you got happy. And then eventually you learned that people smile because they are happy. So you started to smile on purpose whenever you felt happy, so other people would know you were happy. And hopefully, eventually, you start to smile automatically every time you were happy. But that doesn't mean that you aren't actually happy ... it just means that the way you show it is something you had to learn. (On the other hand, maybe you instinctively knew how to fix a computer, whereas someone else had to read the directions. It has advantages and disadvantages.)

A huge recent study done in the UK on people of all ages (birth to 70s) in six countries (UK, Japan, Sweden, US, Brazil, and ... I forget, maybe Switzerland?) found that 1% of the population is on the autism spectrum, across all ages and in every country. What seem to be differences in rates across age groups or in different geographical areas are probably questions of diagnosis methods and people being more alert to symptoms. When the same group of scientists used the same test on tens of thousands of people, there were no differences in rates.

[frazzled-snoozer]

I just want to speak up on behalf of adults with Asperger's (like my fabulous and wonderful husband) ...

It's great to hear about your "fabulous and wonderful" Aspie husband. We always wonder what might be in store for our 20-year-old daughter. She's in the Aspie range of the spectrum and we really hope she'll pave her way in the world and find someone to love. It's good that you pointed out that while they sometimes don't show their feelings very clearly they most certainly do feel things!!! Our daughter just isn't so good at noticing how others feel.

I should elaborate on what I said earlier. Our 11-year-old daughter was in early intervention at 18 months old. Her original diagnosis was severe classic autism which she received from Regional Center then she received additional evaluations at UCLA's Neuropsychiatric Institute and genetics department (to rule out Fragile X, etc). The school system came into the picture when she was 3. Since the child being asked about here is 4 the school is a very good place to start.

As far as the GFCF discussion going on here, it's effective for some. It was only partially helpful for our daughter. Gluten was never much of an issue so we stopped worrying about it when she was 6. By the time she was 8 casein was no longer causing symptoms so she got to have cheese! She was very happy. By and large though.... it's not the big cure-all that you may see touted all over the internet. In the circles we run in it's been most effective for children that all presented in very similar ways. I think dr's will eventually be able to identify these children that are affected in this way and are most helped by the GFCF diet. But our daughter doesn't really fit that profile. She just probably had an allergy to milk that she outgrew.

Meanwhile, I hope this family that was asking questions can get the answers they need. We've been on a long journey with it. But every milestone is worth all the effort!

[tillymarigold]

I just want to speak up on behalf of adults with Asperger's (like my fabulous and wonderful husband) ...

It's great to hear about your "fabulous and wonderful" Aspie husband. We always wonder what might be in store for our 20-year-old daughter. She's in the Aspie range of the spectrum and we really hope she'll pave her way in the world and find someone to love. It's good that you pointed out that while they sometimes don't show their feelings very clearly they most certainly do feel things!!! Our daughter just isn't so good at noticing how others feel.

Well, I would guess that just like with anything else, she'll have to work hard to learn how to have a healthy relationship (although, heck, who doesn't?), but it's certainly very possible. Hopefully she can do it the way young Aspies do nowadays, by getting therapy while young, rather than the way older (over 25, now) Aspies had to do it in the past--by having a series of utterly disastrous relationships as a sort of "trial by fire."

My husband watches "Lie to Me" (a quasi-detective show about how people's facial expressions give away what they're really feeling even though they try to hide it) and that's really helpful, btw. They'll say "Look, he did X, that's a classic indicator of Y," and then show a couple celebrities doing the same thing in famous photos.

[frazzled-snoozer]

Well, I would guess that just like with anything else, she'll have to work hard to learn how to have a healthy relationship (although, heck, who doesn't?), but it's certainly very possible. Hopefully she can do it the way young Aspies do nowadays, by getting therapy while young, rather than the way older (over 25, now) Aspies had to do it in the past--by having a series of utterly disastrous relationships as a sort of "trial by fire."

My husband watches "Lie to Me" (a quasi-detective show about how people's facial expressions give away what they're really feeling even though they try to hide it) and that's really helpful, btw. They'll say "Look, he did X, that's a classic indicator of Y," and then show a couple celebrities doing the same thing in famous photos.

We're going to have to check "Lie to Me" out! Sounds great.

Our daughter's been very fortunate. I don't know what would've happened if her younger sister hadn't come along with severe classic autism. We may've never figured out what was really going on with her. So, she's had help all along the way that I hope will prevent the "trials by fire" you speak of.

Meanwhile my younger brother (who I believe must have Aspergers) has really struggled with his relationships as you described. It really is too bad that so many people have fallen through the cracks. We hope for brighter days ahead!!!!!

[bearded_two]

They guy I know who is an Aspie is my partner. Interacting with him can be challenging at times, but then, I can also be difficult at times. There are times when I don't know if he is mad or he is just not communicating. He has a very good job dealing with and remembering arcane, government security documents and regulations -- I would go insane dealing with that data, let alone memorizing it.

[Kiralynx]

As far as diets, etc. the dx needs to be addressed first. GFCF or the carbohydrate specific diets are extremely difficult. You don't want to go through it willy-nilly. There are also many different dr's out there working on bio-medical treatments for autism. These methods are considered "experimental" by the main stream. But I can tell you through experience that they are worth researching. Our dd improved drastically with a modified GFCF diet and bio-medical treatment.

<blink> SCD requires a learning curve, like anything. But difficult? Not necessarily. I mean, heck, I've been on it for eight-plus years, and even managed to stay fully on it while evacuating for Hurricane Katrina, and all. I've been to the UK & Ireland, to Canada three times, and lots of places in the US.

I think one of the things which drives me absolutely crazy is that people say that something like this is DIFFICULT. And that scares people who might have benefited from it away.

CPAP is difficult, too.

[zaban3]

Another special ed teacher here. Call the special services department of your local school district. They will direct you to ECSE (Early Childhood Special Education). Early intervention is really important. The school can only give an educational diagnosis of Autism (Autism Spectrum Disorder). Medical personnel give the "medical diagnosis".

[frazzled-snoozer]

<blink> SCD requires a learning curve, like anything. But difficult? Not necessarily. I mean, heck, I've been on it for eight-plus years, and even managed to stay fully on it while evacuating for Hurricane Katrina, and all. I've been to the UK & Ireland, to Canada three times, and lots of places in the US.

I think one of the things which drives me absolutely crazy is that people say that something like this is DIFFICULT. And that scares people who might have benefited from it away.

CPAP is difficult, too.

Maybe "difficult" wasn't the right word to use. What I'm really saying is that I wouldn't start one of these diets without really needing it. A diagnosis is the first step in this process. Then research follows. If in your research you find that one of these diets could provide the desired results that's when you begin a diet. People who start these diets without clear objectives are less likely to stick with it. And since they're more difficult than doing whatever you're already doing (particularly to start) you need the proper incentive.

And you're right--the analogy works with cpap also.

[ThomasMcKean]

This thread caught my eye because I know something about autism. Yew might even say I wrote the book on it. (And I mean that in the literal sense. See my signature below.) Back around the mid 90's or so, I was considered one of the country's leaders in the field. Temple Grandin and I did a lot of work together back then.

There is good advice here. But keep in mind that yew have to be careful when people suggest therapies, such as the diets.

Autism is (as Oprah once said on her show and she was talking about ME) "a complex and mysterious disorder that affects the functioning of the brain." The "complex" part of this is that every child, and also every adult with autism is going to be different. So just because one person says they have had success with a particular form of therapy doesn't mean it will happen as well with yew.

The only way to know if any given therapy is going to work is to do two things.

1) Research, research, research.

All parents of children with any type of special needs are obligated to know what they are doing. There are a lot of shady people out there who are all too willing to prey on desperate parents, taking $$$ in exchanged for invalid therapies and shattered hopes and dreams. I have seen this happen many, MANY times. Even if the advice comes from me or Temple, don't just take our word for it or anyone else's. Do your own research and make up your own mind in an EDUCATED way.

Here's an example: Rimland was big on megadoses of certain vitamins, yew will recall. Personally I had a problem with this as the specific doses of the specifi vitamins he was recommending were somewhat toxic. But eager parents just took his word for it because he was a well known professional.

2) Try it and see.

Once yew are certain there is no risk, or that for you personally, the benefits outweigh the risks, then it is time to try it. There is no other way to know than to try it and see.

If yew don't see benefits or improvements in a reasonable amount of time, it is time to try something else. The definition of a "reasonable amount" of time is up to yew.

Be wary of what yew read. Vaccines are still in the news. I know the guy who started that and I have worked with him. I honestly don't know if he is right or not, because there is really no conclusive way to prove it. But I do know that what he did, he did because he felt he was right at the time. He was not in this for the money, as some people have said. He may have been wrong, but his motives and intentions were the right ones. On the other hand, someday he may be proven to have been right all along. One of the hardest things for a parent to accept is the fact that there are just no answers for a lot of the autism questions. The vaccine issue is just one of many.

Some people swear by biomedical, some are dead set against it. Parents must look at these things from all angles and get all sides before they make up their mind whether to try something like this or not.

Drugs and medication are another option and sometimes they even work. There is a danger in giving drugs to children, as we all know. For instance, melatonin has been shown to delay the onset of puberty. Some parents know this and decide it is worth it. An alternate for melatonin would be clonidine. It is prescription and it is safer for kids than melatonin. But it is like everything else in autism. Depending on the person, it will work or it won't. No guarantees.

I could write pages and pages and books and books about this topic. But I will end with this.

Remember that when yew go see a professional, whether it is a Dr, educator, therapist, whatever, yew are paying them because they are supposed to know their way around this disorder. If yew have to explain what autism is to them, don't even bother. Leave and find someone else. If yew are reluctant to do that, consider that yew have my permission. Yew should not have to pay to teach your Dr about autism.

P.S. It was suggested that yew go to http://autismspeaks.org for information. I would sooner recommend that yew go to http://www.autism-society.org instead. The info is just as valid, and they are not near as money grubbing as Autism Speaks is.

[dsm]

Kamrienlorrry

My youngest daughter was always different (pretty well from birth). She did her entire schooling with no one picking up that she had Asperger's syndrome. That only got diagnosed when she was 24 and that because of sheer frustration by us at why she was so different and why no teacher or doctor could see it.

Luckily wife heard about Tony Attwood & got her to see him - http://www.tonyattwood.com.au/ - he was able to identify her spectrum disorder almost immediately from the 1st visit.

Reason she seems to have slipped thru the net were 1) in the 1970/80s the condition was not really understood 2) she had 4 other very active brothers & sisters of close age who always shielded / bolstered her at school (anyone who teased or picked on her got 'the rounds' from her 'mother hen' (middle child) sister (we always made sure the 2 were at the same schools during the same periods).

Symptoms were:
- as a baby was late to talk
- when she started talking she tended to speak in a monotone & machine gunned her words out
- usually needed her brothers & sisters to translate what she was saying when baby sitters came
- was hopeless at sport, but amazingly could dance with surprising fluidity & loved music
- had great difficulty grasping new concepts but if she did, she grasped them well
- had this habit of putting every thing in its place in her very tidy bedroom
- she would happily play alone for hours with simple things like blocks
- loved drawing with colors & doing patterns of colored items
- was an intensely emotional creature as a child
- was unemployable as a young adult
- gravitated to younger people
- could not keep friends

Best advise thus far is get the child to an Autism Spectrum specialist asap & try to pinpoint if and what spectrum disorder is present. Then you can look at the issues such as diet and behavioral therapy.

Good luck

DSM

[avi123]

My nephew is 4 years old and showing what I believe to be signs of autism. His behavior is very different than other kids. However I am not an expert and would really like some insight on what else I should be looking for. Please if anyone has any information they can give me it would be greatly appreciated.

Does the child have parents to deal with it? If yes, I would try to convince them and not get involved myself.

[archangle]

Be very careful about snake oil. There is a whole lot of snake oil about Autism. There are professional for profit snake oil salesmen who either know they are lying or turn a blind eye. Some read their own sales literature and convince themselves that what they're selling is good. There are also a lot of true believers who are advocating useless or even dangerous treatments and advice. There are a lot of angry victims who look for someone to blame and become true believers of quacks and conspiracy theories. There are tons of talk show host types who are glad to be vultures and feed off the misery of autism victims by repeating false or dubious claims.

Don't jump to conclusions, either. Talking about diets and treatments is crazy if you haven't even figured out yet whether he actually has autism.

[Alshain]

I have 2 cousins with Autism and what I do know is Autism can take many forms. My two cousins are polar opposites of the disorder. One for the most part leads a normal life, he is married, and is fun to be around. The other unfortunately is the more severe type of Autism, he doesn't understand his actions, he's been visited by police and has trouble holding a job, even one that is specially offered to autistic people. He makes threats, though I don't believe he would ever carry them out. He always needs to be the center of attention. It's hard to be patient with that type of autism. Over all I have to say if you suspect Autism, you should definitely talk to his parents first, and then a doctor. Don't start treating what you don't know for sure.

[ThomasMcKean]

Be very careful about snake oil. There is a whole lot of snake oil about Autism. There are professional for profit snake oil salesmen who either know they are lying or turn a blind eye. Some read their own sales literature and convince themselves that what they're selling is good. There are also a lot of true believers who are advocating useless or even dangerous treatments and advice. There are a lot of angry victims who look for someone to blame and become true believers of quacks and conspiracy theories. There are tons of talk show host types who are glad to be vultures and feed off the misery of autism victims by repeating false or dubious claims.

That's sorta what I just said in my post. And yeah I agree 100% with all of it. I have had the misfortune of being forced to work with some of them. I wasn't happy about it.

[ThomasMcKean]

Kamrienlorrry

My youngest daughter was always different (pretty well from birth). She did her entire schooling with no one picking up that she had Asperger's syndrome. That only got diagnosed when she was 24 and that because of sheer frustration by us at why she was so different and why no teacher or doctor could see it.

Luckily wife heard about Tony Attwood & got her to see him - http://www.tonyattwood.com.au/ - he was able to identify her spectrum disorder almost immediately from the 1st visit.

I can second this. I know Attwood personally and I have worked with him. I can verify that he is just about the BEST out there. He really knows his stuff!

Reason she seems to have slipped thru the net were 1) in the 1970/80s the condition was not really understood 2) she had 4 other very active brothers & sisters of close age who always shielded / bolstered her at school (anyone who teased or picked on her got 'the rounds' from her 'mother hen' (middle child) sister (we always made sure the 2 were at the same schools during the same periods).

Symptoms were:
- as a baby was late to talk
- when she started talking she tended to speak in a monotone & machine gunned her words out
- usually needed her brothers & sisters to translate what she was saying when baby sitters came
- was hopeless at sport, but amazingly could dance with surprising fluidity & loved music
- had great difficulty grasping new concepts but if she did, she grasped them well
- had this habit of putting every thing in its place in her very tidy bedroom
- she would happily play alone for hours with simple things like blocks
- loved drawing with colors & doing patterns of colored items
- was an intensely emotional creature as a child
- was unemployable as a young adult
- gravitated to younger people
- could not keep friends

Reading this is like looking through a mirror! ACK!!! It's ME!!!!