Uschi, I have most of the problems you've listed too, and so does my son, my husband, my brother...and many others in our families. The joint problems esp. are hard to deal with. At the moment I'm dealing with a flare up of tendonitis, it comes in cycles. I have no idea why I get this, but it usually sticks around for a few months at a time and is in various joints, not just one. No one seems to know why.
I have a cousin who has fibromyalgia, too, I'm sorry to hear you're dealing with that. It sounds pretty miserable...I complain about the tendonitis, but at least it's localized to specific joint (my achilles tendons at the moment).
I really hesitated posting about this issue, for several reasons. For one thing, I hate to add to the 'autism as a disease' idiocy out there. But it really worries me that we are having so much 'help' pushed at us in the form of research that is really aimed at getting rid of us in one way or another (some big favor, eh?) why aren't we pushing for help in areas where help is REALLY needed! I don't see how throwing $110,000 into research into "Genetic control of sexual dimorphism in the nervous system: a nematode model for genetic mechanisms in autism" is going to help me or my family. That's an actual grant, look at the NAAR link above if you think I'm joking!
(OK, maybe that research has some validity, who knows...but sheesh. Using nematodes to study autistics. Honestly. Annoys. Me.)
Wouldn't it be nice to see at least half the total research money available spent actually do *US* some good?
Also, the fibromyalgia is getting worse. I wished that those government people wouldn't automatically assume that I don't need any kind of help if my husband makes a certain amount of money. Because that doesn't mean he will give any of it to me to hire a cleaning lady, or to help me with other things he won't provide (he refuses to help me deal with government people, or accompany me to doctor's appointments, even if it's in the city, which is very stressful for me). He assumes that since I am a very intelligent person (more intelligent than he is), I should be able to deal with these everyday things. But intelligence has nothing to do with it.
Oh what a cad he is! (sorry)
My 22yo daughter has fibromyalgia. She works full time in banking (head teller/customer counselor, a sit-down job) and lives in another city. I do clean her apartment now and then, when it approaches hazardous level. I suppose her ...uh ..."slovenly living conditions" could be related to her fibro. :oops: Now I feel ashamed for thinking so badly of her. Now who's the cad? <banging self on head>
Saying that autistics are more prone to certain illnesses (while autism itself is not an illness) is no worse than saying that black people are prone to sickle cell anemia or that American Indians are more prone to diabetes or alcoholism. That does not imply that being black or being American Indian is a disease, does it? Of course not.
Thanks for making this point, Uschi, I hadn't thought of it that way. You're right.
Hey, we have asthma (mild) and various allergy problems in my family too. I think I've read a connection between autism and allergy problems somewhere recently...I dunno where or when, though. Its a curse reading too much, too fast...while all that info is percolating around in my brain, by the time I have an actual reason to go back and reread a source I've forgotten where/who it is from 
Hi Amy,
I think it should be a matter of course for children to be checked for Fragile X early on if it's a concern...our son had genetic testing done a couple of years ago to rule it out as well as several other illnesses. Luckily nothing abnormal turned up.
Tony Attwood addresses 'lax joints' briefly in chapter 5 of his book "Asperger's Syndrome A Guide for Parents and Professionals". There isn't much information here, though, and he does say it's unknown whether the joint problems are caused by low muscle tone or a "structural abnormality". That's exactly why I'd like to see more information about this...it seems pretty important to establish WHY this is a common problem.
I first heard of the joint problems from the PT and OT in my son's diagnostic team. We have a high turn over of PT's in our health system, so I've discussed this with several others. Ask them WHY this is common, though and they roll their eyes :? No one seems to know.
He'd come in the door and would glare at me, asking me what I did all day and declaring me lazy and uncaring...
It's very hard to convince people that laziness has nothing to do with not keeping your house clean when you have fibro or AS. It's a matter of not having the energy to do it after dealing with everything else.
Ugh. I hope whoever our daughter marries is more understanding than your husband! I'm gad to hear he's come around just a little bit at least.
It is the usual problem of Naming something and assuming everyone knows what is meant. It is a construct. But a construct is useless without operational definition.
You may say to someone i am AS. The you have to explain what that means especially for you, so they understand why you might confuse them. ( Oh blisss to find people who can listen to that and understand). It is true AS is a complex thing. I guess if something is hard to understand people (NT/AS all ) think it is a negative thing.
There is an avoidance too of asking the individual what AS means to them. For example, i find auditory information processing tiring and often cannot make myself clear verbally and do have very flexible joints which need exercise in order to maintain balance.
All these things I have figured out myself, using the construct of AS and then operationally defining it to apply it to myself. because I am becoming well informed about AS.
BUt professionals do not seem similarly informed. They have often spent more time observing abnormality and in limited populations.
(if observation was able to be made of people using AFF, a much more balanced and useful picture be known about AS by professionals. )
I do not want someone to see i have obsessive interests in running, fruit stickers, have little eye contact, do not like car engine idling and assume that i want to change these. No thankyou.
But I would like help with self directed physical activity. This would be financial and would cost little as i do not like expensive things. And i would like help with my studies at uni, so it is helpful to be able to meet regularly with someone who is aware and can help me problem solve.
None of these are *treatments*.
They all focus on what the current health system here purports to focus on, which is the *Strengths Model*.
It seems so obvious. But i am a cynic. I think if something takes heart and sould and time and commintment to adminisster then it is not likely to happen.
becca
(i do get some help at uni, it is a light in a cloudy world at the moment)
This is something I brought up to the psychologist a couple of years ago - the possible connection between autism and scoliosis...
:shock:
I know Williams Syndrome isn't autism per se, but it is considered an "autism-related disorder."
My 14yo WS daughter was just diagnosed with mild scoliosis last month. 10 degree side-to-side curvature, no treatment at this point, only monitoring of further progress.
I believe it was on the Oops Wrong Planet site that I read that when we first began this journey with my daughter.
I just did a quick search for Williams syndrome and autism. The wikipedia says there are some shared features. I didn't look intensively, I'm sure there's better info out there.
Cindy, a couple of years ago I belonged to an Australian autism list. There was a woman who posted there who had several children. I think her oldest boy had Williams syndrome, and another child in the family had mild autism. I *could* be wrong about the oldest son, it's one of those vague memories. If it's of any importance to you, I can rejoin the group and find out?
Is it common for both conditions to exist in the same family? I remember you mentioned chromosone (was it 17?) somewhere.
Anyway, these are the types of questions I'd like to see addressed. The questions I posed earlier are simply examples of things I've noticed on the net, reading other people's stories and issues we've dealt with in our family (gee I've read a LOT these last couple of years. :shock: ) These are questions I've had that I can't find answers for; questions I've heard others pose many times and THEY can't find answers...because no one seems to be addressing these issues. I guess researchers have bigger (more glamourous) fish to fry.
I think we need to start poking some people in the eye about that.
It's chromosome 7 on which the WS deletion occurs. Someone (here?) had posted an article about scientists studying chromosome 7 for something about autism, as well.
Supposedly WS is completely random, occuring naturally in 1 in 20,000 births (not exactly sure of that number), across a broad spectrum of severity.
You don't need to rejoin your old group -- thanks anyway. :grin:
Cindy, my 13-year old daughter has scoliosis as well, because her left leg is 1 1/2 cm shorter than the right. ...Since she has been seeing a chiropractor once a week (and wearing a heel lift) her spine has straightened out considerably. A good chiropractor can do wonders with scoliosis. Once it gets really bad even he won't be able to help much.
Here I go :shock: again! My daughter also has a 1 1/2 cm leg length difference!
We've been seeing an orthopedic dr, who simply prescribed physical therapy for her lower back pain. He said her 10 degree scoliosis was too minor to be treated and he wouldn't prescribe a heel lift unless the difference was closer to 2 1/2 cm.
Maybe I should call a chiropractor.......
Re. scoliosis, mine is moderate (slightly noticable, but doesn't cause me too much trouble), my husband is mild, mainly just one shoulder higher than the other.
I also have a fairly severe problem with TMJ (I've woken up with my jaw stuck open a few times, it stays like that for hours; that's not a nice way to start the day, let me tell you! lol)
Our son has always carried one shoulder slightly higher since he started walking, which is what alerted me to having it checked. The PT we consulted said it may get worse, so we have to keep an eye on it. She also said it was quite common with autism. And she said she didn't know if it was due to a physical difference or had something to do with lax joints or low muscle tone. The PT's and occupational therapists I've discussed this with have all seemed baffled as to why there hasn't been more research into this, which is partly what got me into such a snit :oops: about it.
Is anyone aware of any research or studies conducted specifically to identify or address specific health problems that may be more common in autistics and their families?
2. Have there been any studies that dealt specifically with the health issues of autistic adults and seniors?
Speaking of our older years, why is there no research or studies being conducted for issues that are specific to autistic adults? Yeah, it's important to worry about our kiddos, but understanding health issues that we face as adults is probably just as important to our children as it is for adults. For example, if it turns out we're at higher risk for heart disease in later life, shouldn't we be aware of that to take preventative measures early on?
Absolutely! SassafrasTea, what an excellent topic. It is very important that we get these type of health issue studies begun. Heart Disease is something I have had to deal with lately. My son's father has been from doctor to doctor lately trying to get relief from joint pain and swelling. He too, has heart problems. Scoliosis is in both of our families as is autism.
This is something I brought up to the psychologist a couple of years ago - the possible connection between autism and scoliosis - she said she'd look into it, but I haven't heard anything more on this subject until now. I also wonder if older autistic adults have a higher incidence of alsheimers.
What should we do?
Monastic, I'm sorry I missed this earlier.
I really don't know HOW to get more attention paid to this issue. I guess talking about it is a start. At least I hope so.
And here's another question. Are there ethical problems we should be aware of in bringing up this issue. I discussed this with a friend one time, who warned it might not be beneficial to us to have specific physical ailments identified because it might make it harder to get insurance etc. While I think that's a valid concern, I personally feel that our health and well being is more important than insurance costs...but that's just me, right? I can't speak for anyone but myself.
Anyway...unless someone takes the time and effort to 1. obtain the info 2 crunch the numbers 3. research the findings...these health concerns are nothing more than our trading health histories. That's not exactly going to give us any real idea of whether these are actual problems or simply coincidence.
Well, there's another question. If someone asked you to participate in an actual study of your families medical history, would you even be willing to do so? If it were solely for reasons of 'health', of course, not 'cause' or 'cure'. I'm not sure I'd want to do that! And I'm the one who asked the *** question in the first place :shock: I'd have to think really hard on that one.
S.Tea, walking away mumbling to herself
Ursula, I need braces too! LOL...yours look nice (in your picture), wish I'd done it years ago.
Maybe health professionals need to acknowledge the experiences of their clients and understand that people are an opportunity to learn from, and not just a problem to be fixed.
They do not seem to think beyond what presents itself in front of their nose. There is no excuse for this unless they admit to a learning disorder. In which case i am sure they would be resourceful and interested in new information and able to think for themselves rather than remember a drug company fact sheet.
People are more than numbers (apologies to those who are good at numbers)
becca
[quote]
Maybe the autism "community" should mull this very important issue over for a while before deciding a proper approach.
I think that's a good idea. There are issues, pro and con, that I'm sure I haven't thought of...and appreciate hearing other opinions.