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DoctorWhosMom
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03 May 2009, 9:04 pm

Does anyone have any experience with biomedical interentions? I have a 12 year old who has not been diagnosed but I'm pretty sure has aspergers. I am wanting to start diet and supplements this summer when there will be more time at home and we can concentrate all our efforts on this. Any help or book ideas are appreciated.


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DW_a_mom
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03 May 2009, 10:40 pm

What are you thinking of, specifically?

If the topic is chelation or removing metals, you'll find our members pretty well opposed to it. Dangerous and scientifically unfounded pretty well sums that up.

If the topic is biofeedback, it's more complicated. Totally unproven, but not dangerous, to my knowledge. A real life friend of mine tried it, spent a small fortune, and got no benefit. If you have money to burn and your child does not find it stresfull, then it falls in the can't hurt category.

The goal in this community is help our children be their best selves. We aren't trying to "cure" or "change" them, but to help them grow up to be independent, happy and healthy. I don't believe there is a "cure," and my son wouldn't want one if there was. Well, not for the way his brain functions, at least - he's proud of the unique insights he gets. What he would cure are his mobility/fine motor skill issues, and that is co-morbid and something there is no medical treatment for, unfortunately. It would be nice if someone could spend some time with that, since that is his largest disability.

So I think the place to start is, what do you want to accomplish? What are your goals, and what are HIS goals? At age 12, he is old enough to be involved in all decisions regarding his treatment, from diet changes on up. AS kids tend to be pretty darn smart and self-insightful. They also get really resentful of decisions made without their input, that don't make sense to them.

I have heard that the Tony Attwood books are very good, and will give you terrific insight into your child. The best treatment you will give your child is understanding him and his needs.


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DoctorWhosMom
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03 May 2009, 10:50 pm

I am most interested in changing diet and using supplements, thats about all I have learned about so far. I started out learning about ADD thinking thatwas his whole issue (my youngest has this I think, yet something else to see about diagnosing). But that information lead me to learn about Aspergers and all I have read about just explains my oldest. I'm not looking to change his personality I just want to help him function in social situations better and help him see he's ok, it's the other kids that have the problem. He is very excited about this site and feels very at home here which I am very grateful for, that there is somewhere he feels like he fits finally.


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03 May 2009, 10:50 pm

your son needs to be taught social skills just like any other subject at school and then allowed to practice them. meet your son where he is at and try to move him ahead on the spectrum of social skills.


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DoctorWhosMom
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03 May 2009, 11:03 pm

How important does anyone feel a diagnosis from a doctor is. I have read alot and had him read also to see how much he relates to the information. He seems to think it all sounds very familiar and seems very relieved to have a name for it. That it's not just that he's weird. Any advice?


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DoctorWhosMom
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03 May 2009, 11:04 pm

What are the best resources to teach him social skills?


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03 May 2009, 11:24 pm

You can start by role playing a script

1. "hi how are you? - look in the eyes, shake hand - i'm Jeff, nice to meet you."

then have him practice with family first, every time he sees you he can practice this introductory script. you can tell him to expect to be bullied because he will be. you can google Asperger's Association in your state and call them. they can diagnose and hook you up with a social skills group. most of these are for kids. also check out meetup.com - parents of autistic children groups. if he is the only child, maybe you could find a neighbor or classmate his age who would spend a lot of time at your house doing homework together and playing video games. but don't let your kid stay at anyone else's house without your supervision - kids get sexually abused everywhere so it's not something I recommend risking. i have a whole list of things you should talk to a boy, but i won't list them here. straight talk is always best in my opinion.


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DoctorWhosMom
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03 May 2009, 11:36 pm

He has dealt with either being just tolerated or bullied until this year. He has one or two kids at school that have known him since 4th grade that are starting to accept him and his behavior but school has never been easy for him socially. I have thought about pulling him out next year and home schooling just hi. I think my youngest would benefit this also but he is very social so I don't know that he would be happy or learn as well with just me. This is another reason I would like a diagnosis. If that would make it easier to keep him out to home school. The school systems seem to be more and more against this all the time. And he does like the classes and school work just not the other kids giving him crap all the time. There just seems to be so much to learn and think about all of a sudden. I feel really overwhelmed.


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04 May 2009, 8:48 am

keep him in school. i was bullied, totally isolated, always ashamed, lonely and depressed at school and went most days without saying a single a sentence during the school day. but I still learned by observing other students and became aware of inappropriate things I did when other students reacted. If you keep him out of school you can forget about any functional, independent adult life for him. Aspies quickly get settled in their comfort zone and it's almost impossible to pull them out.

better is to just talk openly with him about his problems, acknowledge his speaking difficulty, trouble making friends, you can bring examples of teasing from WP and so on. basically, the same things are going to happen to him as me. to give you a list:

name calling
confrontation
practical jokes or setting him just for laughs
being visibly alone when everyone is together during lunch
not being able to join group games during gym
not being able to find a partner to work with during group projects
being confronted by girls who are very verbal and are amused by a boy who is not

i would recommend you contact his teachers and directly ask them

is he being teased? is he always alone? is there are a kid in his class whom you could set up to be his partner?

you can do your part by setting limits for him at home, but keeping the stress level down. parents are usually at least somewhat abusive and if you can become aware of the family dynamics that are not easy going you can make him feel comfortable to talk about these things (but for most moms, that's a big longshots, they are always in denial, dead set in their ways, rationalizing).

keep in mind that most parents are either

1) tyrannical and controlling and firm
2) tyrannical and controlling and lenient
3) lenient

very few parents are firm, encouraging, build up self esteem, encourage independence and teach them skills, meet their child where they are at, and refrain controlling behavior, blame, shaming their kid, or emotionally/verbally/physically abusing them.

I say just give a diagnosis right off the bat. Tell him he has mild Asperger's. this will take care of his self blame right away and make him feel better.

Also, get rid of his computer, TV, and video games - these encourage passivity and raise stimulus hungry children. If he has a special interest, definitely set him up to study it.

For homework, you need to set out a Quiet Time where you let him sit quietly and YOU DO NOT TALK TO HIM AT ALL and don't distract him for half an hour. Let him do whatever he wants, it does not have to be homework at first. You want him to put himself to do homework on his own accord.


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04 May 2009, 10:12 am

Benefits such as accommodations being made to help him be more successful/happy at school and access to services (speech, OT, social skills training etc.) come with an official diagnosis. What exactly these accommodations and services are seems to vary greatly between different areas. You may want to research what is available in your particular school division, and then make the decision about whether or not to get an assessment based on what the benefits would be.

In regards to the biomedical stuff, there seems to be a million different theories, diets and "treatments" out there. I am pretty skeptical about most of it. We do supplement our sons with fish oil, and avoid preservatives and food dyes in their diets, but that's more just common sense nutritional stuff that would benefit anyone's health.



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04 May 2009, 11:58 am

Diet and supplements

The diet change that you will hear the most talk about is the gluten / cassien elimination, and totally unscientifically I will say that elminating one or both seems to help maybe 1/3 of AS feel healthier and think clearer. Gluten seems to be the one most commonly eliminated. The gift you have with an AS child is that he can and will tell you if he likes the change and feels it makes a difference, so you will be able to experiment with much smaller changes - ie either gluten or cassien - than the parents of many autistic kids advocate. They have no idea why it sometimes works or which element it is; we do ;) As long as your son is on board and in agreement with the changes in his diet, and you take pains to replace the missing nutrients, it falls into the "can't hurt" category, IMHO. You may like it, you may not. There is no miracle here, but if it helps your son feel healthier, that will be a good thing.

Home schooling

Most AS feel that homeschooling is an excellent option and that the opportunity to effectively learn social skills in a traditional school environment are pretty limited and not worth putting your child through hell for, if his experience is being that negative for him. We've done fine with public school for our son, but there are any families here that homeschool. This will be a very personal decision between you and your son, and there is no solid best answer that fits all AS kids.

Diagnosis pro's and con's

Diagnosis has helped us immensely in that it has gotten us services through the public school system, and allowed my son to benefit from a system of accommodations at school. We've got a bit of what I feel is the best of both worlds for us, at least, in that my son's diagnosis was made on a tentative basis by the school, and serves well enough to get the IEP and all accommodations, without being entered on his permanent medical record. Through the school he receives speech therapy (pragmatic language and social skills) and occupational therapy (he has terrible problems with motor skills, and writing is literally painful for him). He also gets an IEP through which we can ask for things like lengthened time on tests (his processing speed is very slow, even though he is a GATE student), permission to leave a classroom and head to resource when he needs to for sensory or emotional reasons, permission to dictate instead of handwrite any assignment, and so on.

The downside is that having AS on one's record can result in discrimination. The instances of this seem to be very isolated, but there is real concern among many adult AS about having employers or potential employers find out.

Flip to that is that if your son finds it difficult to work for sensory reasons, a diagnosis might allow him to collect disability.

I don't know how the later two weigh out since, as I noted, we get to postpone that decision. My son can pursue a medical diagnosis when he is older if he needs to. Right now, we're set with the school system and happy. Basically, the decision is going to be very unique to your own facts and circumstances, the state you live in, and so forth. But, more often than not, having something that will give you leverage with the school would be a great tool. If you can get that without a medical diagnosis, like we did, then great. But that seems to be rare. You could try, however - you may ask for an IEP assessment. Your school has to offer it once you request it.

Good luck. I know it's overwhelming right now, but you've found the key, unlocked the chest, and are sorting through the treasure of secrets hidden there. It's a start.


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04 May 2009, 9:08 pm

Have you tried hitting him with a newspaper yet?

Sorry, I couldn't resist.

There is many things you may want to learn eventually about Asperger's syndrome, but there are a few important basics you should know first.

1. Asperger's Syndrome/autism is NOT the enemy. Too often people attribute all the perceived problems to it and make it seem like some horrible life crushing thing which needs to be treated, and hopefully cured. This is not the case. Simply put, your son's brain is wired differently, not wrong. He may not be normal, but that doesn't make him sick, or defective and in need of treatment. Now I am not saying that AS(aspergers syndrome) is all fun and free of problems. As anybody who lives with it can tell you, there are definitely difficulties that arise due to the condition. But that doesnt mean that it is the source of all your problems and in need of fixing.

The best way to describe it is by comparing men to women. Being female comes with problems that men dont face. You generally are physically weaker then men, you have more problems associated with reproduction (pregnancy, periods, etc). Women in general have worse memories then men, and do worse at math and science (which is why most engineers are men). You also have a societal basis against you, which is why women on average earn less money then men do for the same job. But yet despite these problems, nobody is calling for a cure to being female. That's because we as a society realize that being female (while it may come with problems) is not a horrible disease, but merely a different type of person.

Likewise, dont look at asperger's syndrome as some problem which is causing your son difficulty, and needs to be fixed. Look at it as being part of who he is, just as being a women is part of who you are.

2. Don't panic. If you focus all your time and energy on whats going wrong then your going to be worrying, and focusing on all the wrong things. Your son has a lifetime to work on things like small talk, and in reality, all you can do is give your son some resources and hope he can use them. You cant force your son to be something he isnt. Instead of panicking over what he hasn't accomplished, and trying to make him better, just be patient, and help where you can. It is far better to just support him at his own pace then to try and push him faster then he can go, because if you do that he is only going to develop anxiety, and worse.

3. The best way to help your son is to look at areas where he would like to improve, or that are NECESSARY for his functioning in society. Then, work WITH your son to develop a plan to help in these areas. That may include trips to a speech therapist, or social lessons. I should stress the first part again. If your son wants help in an area he struggles, then go ahead and get him the help he wants. This may include social skills classes if he wants to get along with other kids better. If he NEEDS skills in a certain area in order to function, then you can try working on those areas, even if he doesnt see the need now. For example, if he has difficulty controlling his anger, and attacks people, you may need to sit down and work with somebody who can help you with this. While your son may not understand why him attacking is such a big deal, it is important to fix this problem as early as possible.

But if it doesn't fall under the category of HIS wants or needs, then I would avoid unnecessary 'solutions' to problems that dont exist. For example, when I was young, I didn't socialize much. My parents thought this was a problem (I didnt) and so they came up with the solution of signing me up for every little league event possible. Trust me when I tell you it was horrible. Forcing somebody who isnt comfortable in social situations into them against their will isnt a great way to fix their social problems.

4. Don't try to stop your son from being autistic. Many 'experts' are far to concerned with stopping any autistic behavior, and working on the areas of weakness. Experts will tell you that your son shouldn't stim, or spend time with his interests. I'm here to tell you thats complete crap. You dont make a career by being decent at something, you make a career by being good at something. Getting your son to make small talk better wont get him a good job. Allowing him to explore his passions, and learn things that fascinate him will allow him to expand his mind. Not to mention it is a great deal of fun. Don't try to stop this because it is an 'obsession' or 'unhealthy'. Likewise, if your son wants to just be alone for a while, then let him. Don't try to drag him out and make him socialize because your afraid he will get 'stuck' in his autism. That's just asking for problems. Keep in mind that your son isnt normal, and any attempts to force normality upon him wont help. I'm not saying that he gets to spend the rest of his life doing whatever he wants, but I am saying don't try to force societies expectations on him when they arent necessary or helpful.

5. Be supportive as much as possible. I'm not saying let your son walk all over you, but I am saying that you should try not to get upset over the small stuff. Be forgiving, patient, and understanding as much as possible, because this is what your son needs more then any therapy. Trust me when I tell you that I did not enjoy my childhood because I was mocked and insulted at school, and my home was not a safe haven to return to. Pain and problems in this world are an unfortunate part of life. But you dont need to add any more problems to your son then he already has. I can tell you from personal experience that making your way through hard times does indeed build character, but it also weighs you down quiet a bit. Your son has enough weight on his shoulders, try not to add more.

6. There isnt anything you can do to 'fix' the autism, but you can help alleviate some problems which cause the autistic difficulties to be worse then they need be. Autistic people have a greater percentage chance of auto-immune problems (allergies) then the general public. I dont know why this is, but it is possible that your son might have an allergy to something which causes him to have problems thinking. Otherwise known as having your head in a fog. Some people with autism have reported that removing certain foods from their diet have helped to reduce this 'fog', and thus they were better able to cope with the world. Others say that their digestion improved when they stopped eating something, which led to them feeling better and being less irritable. There are a couple different diets you could try to see if they help, but if your son is feeling fine already, then the diets may not do much to help.

7. Here at Wrong planet we will gladly give you advice(quality is not assured) if you ask more specific questions. We try to help as best we can, and while we may not have all the answers, we in general have a decent idea of where to start. Feel free to make more posts, and we will try helping you with whatever problems you are facing. Also, remember to stay calm. I doubt you were expecting this when you decided to have kids, but do realize that this isnt the end of the world. While it may be overwhelming at first, try to remember that your son is the same child he was before you heard the term AS, he hasn't changed.

Dang, this was supposed to be a short post.