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What Do You Need to Know About Autism?

By October 4, 2009

Dear Readers,

I'm planning for new content on this site, and wonder what you feel would be most helpful to you?  Here are a few of my specific ideas; let me know if any of these float your boat, or whether you have other, better ideas.  Based on your responses to this blog, I'll create a poll to prioritize.

  • Directories (by US state) of private autism schools
  • Ideas and resources for homeschooling children with autism
  • Recipes and resources for special diets and supplements
  • Information, resources and ideas for community inclusion
  • Ideas and information and managing behaviors, handling discipline
  • Low cost, DIY and long-distance therapeutic options
  • Articles on teen issues (dating, hygiene, post-high school programs, college, job training)
  • Articles on adults issues (housing, SSI, employment, marriage, etc.)
  • Articles on adult self-advocacy (the politics of autism)
  • Medical issues related to autism (seizure disorders, mood disorders, etc.)

I'd also like to know whether you are interested in keeping abreast of autism "politics" -- controversies over vaccines, fundraising, health insurance, etc.  -- or whether you're more concerned with day-to-day living.

Your thoughts and suggestions are much appreciated.


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Comments
October 4, 2009 at 12:14 pm
(1) Sandy says:

I think for your vast readers, you need to have alot of what’s on your list and although I focus on day to day, many others want to read about the politics and I of course read everything you include on this site anyway including things that don’t pertain to me like home schooling, that info may help some one I know.
Are you looking to create a poll to see what’s most important to your readers and based on that eliminated the things not so important?

October 4, 2009 at 12:18 pm
(2) autism says:

Thanks, Sandy! Yes, I do plan to create a poll – but I did that once a while back and it wasn’t nearly as helpful as comments would be.

For example, it’d help me to know whether people feel their local need are met through school and support groups… whether many people are really thinking “college” for their child with autism… whether there are big gaps in information available about, say, seizure disorders and autism.

Lisa

October 4, 2009 at 12:54 pm
(3) Sandy says:

Well, I can say for myself, my son is far too young for me to be thinking about college. I think a good area is educational laws, for those whose kids go to public school, and how to obtain an advocate if the parent cant get any where themselves. I personally think that’s one area we don’t see often, or info of how to obtain useful help when you have problems at school.

What I would like to see in between those great article topics you have, is maybe topics like hat you have above. I think it’s great you’re offering forums too.

October 4, 2009 at 1:06 pm
(4) Christine says:

Hi, I would love to see more on homeschooling. I understand more and more parents are taking this route however, I feel there is not much information out there. Why do parents turn to homeschooling, what are the outcomes, what teaching strategies are they using, what level of functioning is their child etc. I would also like to see special education classrooms compared to mainstream based on level of functioning and the outcomes. All of the ideas you have listed above are of interest to me. I also think information on front line training for those working with someone who has autism and the mandatory training courses you and others think should be a must.

October 4, 2009 at 1:06 pm
(5) autism says:

actually, I think education law/advocacy is covered so well on other sites that I simply point to those sites in an article on “best sites for autism education.” The all time best site is Wrightslaw.com, and I couldn’t possibly do what they do.

Just had a parent ask me where she could find info on an appropriate “autism education” — whew! Wish there were such a thing, but I could do an article on what to look for. Problem is – we got a lot of what I’d suggest you look for, and even so our son was basically relegated to the “poor baby will never succeed” class.

Lisa

October 4, 2009 at 1:14 pm
(6) autism says:

Thanks Christine!

Can definitely provide more on homeschooling, but so far as I know there are no studies on outcomes — just anecdotes. Similarly, there are no standard curricula for kids on the spectrum, both by law and because it’d be too hard to find one thing to fit all.

The difficulty, IMHO, is that there are assumptions about kids with autism that are taught to teachers (visual learners, easily distracted by posters/bright colors, need written agendas, etc.) – but those assumptions aren’t correct for all kids on the spectrum. I could discuss that in article form — if it’d be helpful?

Lisa

October 4, 2009 at 6:39 pm
(7) Sandy says:

I meant more like Christine was saying about home schooling. Wrightslaw site is good, but you really need the person-support to do anything with that info. Many sites seems to dominate on topics, while the one thing many of us deal with daily is education for our kids and it’s hardly ever covered.

October 4, 2009 at 9:20 pm
(8) Autismnewsbeat says:

How about a site that exposes autism myths, along the lines of how Snopes.Com sets the record straight on urban myths?

October 4, 2009 at 10:08 pm
(9) autism says:

I think I can safely leave that to you, ANB.

Lisa

October 4, 2009 at 11:15 pm
(10) ANB says:

Maybe the NY Times can pay me to do that. ;-)

October 5, 2009 at 12:13 am
(11) Sandy says:

Well, there’s many sites for home schooling, diet info and recipes, and myth breakers about autism. I think the myths is a good idea to keep on hand although it can be argumentative, but those myths will serve new parents to autism and the public.

I think what you really need to do is poll the readers for the ages of those children with autism, and those who are adults with autism, which will give you a better idea of what readers might be looking for in content. You almost have to have a well rounded content to serve them all.

October 5, 2009 at 7:15 am
(12) autism says:

I actually do have an article on autism myths (http://autism.about.com/od/whatisautism/tp/topmyths.htm). But that’s not what ANB has in mind.

Correct me if I’m wrong, ANB, but I believe he would like to see me say that any suggestion of a relationship between autism and vaccines is mythical. I’m thinking he may also want me to say that many other purported biomedical beliefs about autism are myths as well.

The fact is, however, that while I have OPINIONS about those issues (as well as opinions about treatments, education, etc.) I do not KNOW what causes, treats or cures autism in the larger sense.

At this point, studies seem to point in many directions – even studies conducted by mainstream institutions, government agencies, etc. There are genetic findings, for instance, but they are in the early stages and seem to relate to a tiny fraction of people with autism.

Meanwhile, there are studies that say, for instance, that GI issues are and are NOT more prevalent among people with autism, for various reasons ranging from inflammation to genetic predisposition.

As a result, I will not be announcing that certain theories are myth while others are fact.

ANB, as you probably know, About.com’s editorial is not closely linked to the NYT’s editorial.

Lisa

October 5, 2009 at 7:49 am
(13) ANB says:

Sorry Kreskin, that’s not what I had in mind.

By myth I’m thinking of something that is demonstrably, provably false. That’s why I referenced snopes.com .

Do the Amish have autism? Did the FDA replace thimerosal with aluminum? Has the rate of autism increased a zillion fold since 1983?

Yes. No. No.

Yes, there are studies that cut both ways. But that’s not only true of autism. There are also “studies” that tell us the earth is 6,000 years old, and that the holocaust never happened. Are you also sitting on the fence on these topics as well?

What exactly is different about autism?

October 5, 2009 at 9:02 am
(14) autism says:

If those are your issues, ANB, then indeed I have written about all of them.

Yes, the Amish have autism: http://autism.about.com/b/2008/04/23/do-the-amish-vaccinate-indeed-they-do-and-their-autism-rates-may-be-lower.htm

Yes, thimerosal has been removed from almost all vaccines, leaving only “trace” amounts: http://autism.about.com/od/causesofautism/a/dovaccines_2.htm

No, vaccines are not made of dead babies, though aborted fetal tissue was used in the culturing of some elements of some vaccines: http://autism.about.com/od/medicalissuesandautis1/f/vaxfetal.htm

As to the issue of whether autism is on the rise, I personally believe that the question is very much up in the air. WE DO NOT KNOW. http://autism.about.com/od/causesofautism/p/ontherise.htm

This site is not a “mythbuster” site — but as you can see, I have addressed the myths that are truly myths (and written plenty of blogs about the nutsy theories of autism causation such as TV, rain, etc.).

Does that satisfy your concerns?

Lisa

October 5, 2009 at 9:12 am
(15) barbaraj says:

Is it that easy? The Amish here, do have autism, the Amish here do vaccinate, however, few vaccinate, almost only the younger generation, and among those vaccinees there is autism. I don’t see a point proven here , other than their vaccinated population isn’t any different than the general public. It would prove out in logic, some vaccinate among those some have autism. Instead of guessing, or going to their vaccination clinic for the answers, there should be a study going on within their community , they would have a large number of controls, probably in the area of 30% nonvaccinnees. This is where I suspect the “amish study” originated, as a dialogue between someone and the unvacinated Amish. In that respect it’s likely a true finding. It can always be twisted, “they vaccinate, have low autism rates”..wouldn’t we have to question that? of course, because again it’s wrong ,as wrong as amish don’t vaccinate, no autism!…it’s simply they vaccinate, they have autism, those that do not vaccinate, don’t..and within this community we could get solid statistics. I buy their pies every weekend, the kids like them, I don’t take the kids, because they “do” occasionally have outbreaks of preventable diseases.

October 5, 2009 at 9:16 am
(16) autism says:

A request to commenters: I would really love to get reader opinions on what they’d like to read on this site. I understand that there’s plenty say about vaccines, the Amish, etc., but maybe we can take that up another time/place?

I know, I too get too involved with the back and forth on these issues… so I’ll stop too!

Thanks so much,

Lisa

October 5, 2009 at 9:26 am
(17) barbaraj says:

I’m sorry, I guess this means my vote would be for a “myth busters” topic, again sorry..

The forums, if more active , would be a wonderful place to share daily opinions on current issues..however it doesn’t seem as though many participate..

October 5, 2009 at 9:47 am
(18) J says:

I’m not sure if this suggestion applies here, or could be worked in another way, but I like to hear from autistic adults. I’ve read their views on eye contact and toileting and found them to be very enlightening.

Another thought, kind of along the lines of homeschooling, is identifying and working with different learning styles.

Thanks!

October 5, 2009 at 9:50 am
(19) Sandy says:

I’m a little surprised. ANB suggested autism myths, not vaccines myths and I’m surprised the 2 were connected. But you did ask if readers were interested in the politics or more into day to day. What happens if more are interested in the politics?

I’m also a little confused as to what you’re asking. I have linked to this site many times and you can do a search for many of the idea’s and you’ll find a lot of content on about all of them is already there. I have linked to the autism myth on this site, but I have also linked to at least 3 or 4 idea’s above so I am confused as to exactly what you’re asking readers- adding content where? And is it to maybe update other content already there? Are you talking about what you blog about? I have been perfectly happy with your blog content and you keeping up on current media that isn’t dominated by one theme. That’s what keep me coming back, this site allows for other topics of interest to be blogged about.

In my opinion, you have to offer it all. Autism kind of allows for parents to be in all sorts of different avenues and you’ve always done a wonderful job covering them.

October 5, 2009 at 11:29 am
(20) Candice says:

I am interested in adult issues involving the individuals no longer in special education needing 24/7 care. According to Boy, Alone, by Karl Greenfeld, the situation is bleak.

October 5, 2009 at 11:29 am
(21) John says:

Treatments – I know there’s not a lot of evidence and not a lot of credible research on anything other than ABA. On top of that, it’s hard to figure out what is going to work for your particular kid. For all the research on causes, which may someday lead to physiological/pharmaceutical cures, what a lot of us whose kids/grandkids are already diagnosed need are solutions/answers/treatments.

October 5, 2009 at 11:57 am
(22) patricia villavicencio says:

I have a 29 year old daughter diagnosed with autism when she was 4. She was born in Florida, but she has lived in El Salvador all her life. I really interested in anything you can tell me about adults with autism.

October 5, 2009 at 12:11 pm
(23) autismnewsbeat says:

But you did ask if readers were interested in the politics or more into day to day. What happens if more are interested in the politics?

Yes, she did ask. And politics cannot be neatly separated from day to day concerns. John is apparently confused, as are many of us, about the solutions, answers, and treatments that we hear about. Addressing some treatment dead ends (chelation, HBOT, magnetic clay baths, etc.) would help parents narrow their search. Of is this the wrong place?

As to the issue of whether autism is on the rise, I personally believe that the question is very much up in the air.

It’s not a matter of personal belief. The fact is, there are no good data one way or the other. But it is clear that the Generation Rescue claim that rates have risen from 1:10,000 in 1983 to 1:150 today is nonsense, and needs to be addressed as such.

The parent survey story that came out today is sure to spark more talk of an autism epidemic. Where do you stand on that, Lisa? Is it important to note that the “new” 1:100 rate was predicted ten years ago?

October 5, 2009 at 12:27 pm
(24) AutismNewsBeat says:

Right on cue, the Autism Society of America says the 1:100 rate means you need to send them money!

**BREAKING NEWS: 1 in every 91 American children now has autism**

Could that statistic be correct?

Unfortunately, yes. It’s not a misprint.

According to the Department of Health and Human Services National Survey of Children’s Health, 1 out of every 91 children — 1% of American kids today — has an autism spectrum disorder.

That’s up from 1 child in every 150, just a few years ago in 2007…

And if that’s not shocking enough, these statistics don’t even include adult prevalence or those children who remain undiagnosed — a still too common occurrence.

So what do we do now?

We show our outrage at government inaction… and we ask our elected officials to explain why though autism prevalence is skyrocketing, investment in treatment, services and support is stagnant.

We realize that this fight is up to us… As the nation’s leading grassroots autism organization, we re-commit ourselves to improving the lives of all those affected by autism and rallying America to our vital cause.

The ASA is deliberately misleading parents when it says That’s up from 1 child in every 150, just a few years ago in 2007…

How do I know. Because the title of the study is “The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007

According to the ASA, the rate of autism jumped from 1:150 to 1:100 in the same year!

No wonder parents are confused. The Autism Society of American, whose main asset is its name, sends out misleading fundraising letters, scaring parents about an autism epidemic with no meaningful data to back up its claims.

And self-proclaimed autism bloggers raise nary a peep – because of personal beliefs?

October 5, 2009 at 12:36 pm
(25) Tere says:

These are all good ideas on topics. Something that i think that is important to talk about that often is not, is that some children with the label of “autism” may have some explainable brain damage like fetal alcohol effect, fragile x or the mother’s pregnancy complications. If a child is adopted, the mother is not forthcoming with information or the child is not tested for fragile x we would never know that and perhaps the child’s issues are a direct result of these things. The point is not to place blame but to take away some mystery so we can have some more information to prevent these things in the future and study the cases that are very unclear instead of wasting time with theories that should be ruled out. Many children would just possibly be considered autistic only by the public school system but really have autistic behavior because of other issues . The cases that do not have these histories can then be studied and then maybe more research can be made on the case that really do not have any explanation.

We all love our children but some of us have typical children as well as autistic children and they have enough to worry about with an autistic sibling, it would be very important if they could have more information when they have children in the future. We would all use more information and the best research possible.

October 5, 2009 at 1:48 pm
(26) Waikiki says:

Some ideas:
What to do when you just find out that your child has autism.
How/When/What to – and no to inform to family, friends/school/neighbours?

October 5, 2009 at 8:14 pm
(27) Joel Hornstein says:

I would appreciate information about life after high school (not college-bound).

October 5, 2009 at 9:25 pm
(28) Aaron says:

Could you also include Canada in your list of resources?

Thanks

October 5, 2009 at 9:51 pm
(29) smf says:

Some ideas to help me:
Include articles on improving your child’s social skills, dealing with neighbors who stare and don’t include you in their get-togethers, taking care of your marriage, and taking care of the caretaker, deciding to hold your child back a year before starting kindergarten, pica.

October 6, 2009 at 1:33 pm
(30) brenda says:

It would be helpful to know what opportunities there are for adults with autism who live in group homes. We’ve found services group these adults with those of other disabilities such as Down’s Syndrome. Workers are not trained to recognize and deal with behavioral issues such as aggression and self injury. There is a high turnover rate of staff which is especially distressful to people who rely heavily on consistency. DHHS seems lost and residents can be “bounced” from one home to another.

October 19, 2009 at 4:17 pm
(31) Silvia Planchett says:

This guy deserves no break . He pollutes our planet with hi fuel guzzling 747 in order to satisfy his ego! Screw him and the horse he roder in on!

October 21, 2009 at 1:03 pm
(32) C.Mom says:

Would love to see more info for adults with more severe autism. Like Candice posted the ones that require 24/7 care -handling meltdowns voacational training tips, changing meds as they age and that…

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