Aspies For Freedom

Hi all,

I had a look recently at the current list of grants from the NAAR towards funding autism research  http://www.naar.org/news/render_pr.asp?i...ItemID=301  . Looking at this list brings up a couple of questions that have been annoying me this last year or so:

Considering the scope of research directed at finding the 'cause' of autism, or a 'cure' for autism :

1. 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?

In looking at the list published by the NAAR, I can only see a couple of studies that might even vaguely address these types of issues. Probably the only really important 'health' issue being addressed concerns autoimmune differences in autistic families. And how much you wanna bet that study is actually being conducted with the 'cure' 'cause' agenda rather than a 'health' agenda?

Here's my problem with this. The fact that the overwhelming majority of research money has been been funneled into 'cause' or 'cure' issues ( 'cause' being specific to avoiding autism by whatever means, or 'cure' to erradicate autism by whatever means) while ignoring the equally (ok I think--VASTLY MORE important) issue of health of autistics and their families implies:

The only important issue to society concerning autism is either our 'cure' or 'erradication'. No one really gives a flying fig about our health.

In other words, if we can't be cured or avoided, who care about our quality of life.

Am I alone in finding this really offensive? I haven't seen this issue addressed anywhere...am I missing something? Does anyone know of a site that addresses this issue?

Are there any studies being carried out on health issues such as:

1. Is it 'really' normal for an autistic person to have an abnormal eeg reading? We've run into this problem with our son, and I've often seen it discussed on parents forums. The problem is that many autistic people who test as epileptic are being told their eeg readings are 'normal' for autistics and do not require treatment. As far as I know there is no research into the truth of this. Is it 'normal' for an autistic to have an abnormal eeg reading? If so, should it be treated with anti epileptic medication or not?

2. Connective tissue problems. How many of you are aware that it is very common for autistic people to have unusually lax joints (I think the medical term is 'hyperextensible' or 'hypermobile')? How many of us are double jointed? Have TMJ? Have scoliosis (everyone in my immediate family has scoliosis btw). How does this affect our quality of life in our later years? I would assume we would have a higher incidence of degenerative joint diseases in later years-- has anyone addressed this? Also would this translate to a higher risk for heart disease, as is seen in other groups of people who have connective tissue difficulties (such as Marfan's syndrome and Ehlor-Danos (sp?)...both of which I have heard discussed as having a higher incidence of autism btw). What other specific problems might this cause? And importantly...why is a person with a 'neurological' condition more susceptible to such a 'physical' problem? What's up with that???

3. Is it true that we have a higher incidence of auto immune disease, especially in later life? I've often heard this talked about by individuals, I've seen nothing in the medical literature to back this up or disprove it. Also along these lines is the higher incidence of allergies in autistics and their families.

4. Why is celiac disease more common in autistic families?

Ok, I'll stop there.

Am I perseverating on something pointless here? I haven't seen these issues addressed anywhere. Have I been missing something? It seems like such an important issue, surely this has been address somewhere?

STea

By the way, I thought of putting this under genetic issues, but ultimately, I think this problem has more to do with our lack of consideration by society...so here it is. Amy if this seems like an inappropriate place for this topic, please feel free to move it.

Autism Diva just posted an abstract from a study of gastrointestinal problems in autistic children.  I found this paragraph very interesting:

This indicates that being diagnosed with a "disorder" and the resulting anxiety may itself be causing significant health problems in the autistic population.

Thanks for that Bonnie, I love reading her page...will have a look. Maybe that's a concern to check off my list? If so, GOOD!

I know that stress has had a major impact on my son's life this last couple of years...and often wondered how much of his 'seizure' problems are actually related to the high stress. Funny that we didn't see any symptoms until he started school. His eeg's are pretty chaotic, btw...I'd love to find out why and what to do about it. It's very hard not knowing for sure.

Anyway, still a lot of questions, and not a lot of answers. Do you think there should be more research to determine if autistic 'health' issues are worth more attention? Perhaps more of the issues, like the GI issue,  that are assumed to be common in autism are actually not...we won't know for sure until attention is given where attention is due.

STea, I have hypermobile joints, and have always had problems with my joints (as in unstable ankles, weak wrists, aching knees that might give out on me on the stairs, aching back etc.). I have also read that this problem is more common in autistics. I also have fibromyalgia, which is being debated as being an autoimmune disease.

And you're right, it seems that real health issues in autistics are being ignored, especially in adults. They know that they can't 'eradicate' autism in adults, or try to train them to act like NTs, because we'd never allow it. So, they like to ignore us. They don't like to provide any services for us, because then they'd have to acknowledge that we actually exist.

I forgot some things, I also have asthma and psoriasis. Dyscalculia is another problem (which is not a disease either, but a handicap).

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.

Also, I find that I am getting more autistic with age, as in needing more time alone, having more problems tolerating noise, lights and bright colours, disliking touch more and more etc.

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.

Cindy, working full time probably uses up all the energy your daughter has, and she likely needs the whole weekend to recover sufficiently to be able to go back to work on Mondays. If she'd be cleaning in the evenings or on weekends, she'd likely be too sick to work very frequently.

I married when I was 26, and had four of my five children within 6 years of getting married. In my husband's opinion I should have been able to look after four small children and clean the house no problem (in his opinion, looking after four kids wasn't even a job). We didn't know about fibro or AS then (not to mention TS). So, in the evening I'd often lie on the couch, totally exhausted, when he came home. The house would be a mess, and supper wasn't cooked. Mind you, the kids were happy, clean and well fed.

He'd come in the door and would glare at me, asking me what I did all day and declaring me lazy and uncaring.

If I'd bother telling him that I had no energy left to even stand up, never mind doing anything, he told me that I just didn't love him enough to look after things. And then he'd force me to get up and cook supper. Since that was a 'woman's job', I had to do it. He said that he was gone all day to do his job, and I better get at it doing my job.

He will help with the housework now (he has been the last two years), but still won't cook. If I can't cook he'll go and buy something or we just have sandwiches though, he won't make me cook any more (I wouldn't do it now anyway, even if he'd try to force me, and he knows it).

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.

Uschi, have you heard of mobile joints being a part of Fragile X? Some aspies (small percent) have undiagnosed fragile x, and have these joint problems.

Could it be something to look into? There are varying severities of fragile x.

Thank you for bringing this hughly important topic to our awareness!!!

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?

I have never heard of williams described as an autism related disorder, only that they were opposites.

Cindy, my 13-year old daughter has scoliosis as well, because her left leg is 1 1/2 cm shorter than the right (the gynocologist who did the c-section couldn't get her out and twisted and pulled on her leg and broke it, splitting her femur from top to bottom, injuring at least one of the growthplates). 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.

I have a cousin who was born prematurely and later developed scoliosis so severe, he had to have surgery. He has other disabilities resulting from his premature birth, but isn't autistic or anything. The surgery done at the local Shriner's hospital fixed his scoliosis and he's walking just fine today.

I did have a slight form of scoliosis, but all that was needed was to watch it as I grew, and it improved on its own. My Asperger's was only diagnosed as an adult, less than a year ago although I had suspicions of something. When I finally got the diagnosis, it was a relief.

Cindy, what just occurred to me is whether there is an apparent reason for your daughter's legs to be different lengths? With Susie it's obvious, all you have to do is measure her femurs, and the left femur is very obviously 15 mm shorter than the right.

Just today I saw my chiropractor, and he checks if both legs are the same length every time you are on his table. Well, today my legs were different lengths for some reason, and he adjusted my pelvis to fix that. When I walked out of there my legs were the same length again.

Last winter Susie had a bad fall snowboarding, and when we saw the chiropractor, her left leg was LONGER than the right one! Again, adjusting her put her to rights.

Which makes me wonder how many people are out there with one leg shorter than the other, having physiotherapy, wearing heel lifts, wearing a thicker sole under one shoe etc., and eventually ending up with arthritis in the spine or joints, when a simple chiropractic adjustment would have fixed the problem.

SassafrasTea, I used to have severe TMJ as well, which was fixed to a great extent with braces (from ages 44 to 47, no fun!). I have heard of quite a few Aspies with TMJ. It seems that autistic people have more problems with joints than NTs, and of course that includes the jaws.

This is what the doctor that operated on my youngest sister's back told us about scoliosis.  He said that it's not so much something wrong with the back and it's vertebrae but the curving begins in the spine.  It curves because messages from the brain tell it to grow in this curved manner.  

This doctor felt that it had more to do with the neurological side of a person rather than the bones, muscle and vertebrae itself.  Perhaps this is why the cause of scoliosis is still very much unknown.  

My sister's surgery was a few decades ago....her own daughter's surgery was maybe about 9 years ago and much has been learned in the way of surgery procedures but still very little about the reasons for the curving spine.  Back when my sister was going in for brace fittings (before surgery was necessary) we noted how many people in one family had this problem...but when we mentioned it to the doctors, they all but laughed away the idea that genetics was in play.  Even though we had no medical education, we knew of the possibility, even as children.  

Wow SassafrasTea, you've brought up some other things that I didn't think of.  In this day of insurance prices rising, I would hate for my family to be thought of as a health risk because of autism.  I was thinking of writing to government officials to ask that some of the grant money be put into health research issues, but now I'm not so sure now of this idea.  

Maybe the autism "community" should mull this very important issue over for a while before deciding a proper approach.

Very true. But chiropractic adjustments will tell the brain to adjust it's messages. Susie went three times a week at the beginning (as did I) to readjust the brain as well as the spine. Of course, in her case the crooked back is a direct result of different leg lengths, but that's what her brain had adjusted to.