Yesterday,  we were introduced to two new culprits of the greatest fallacy of a generation, Dr. Paul Steinburg and Benjamin Nugent. What is this great fallacy? That Asperger’s Syndrome is nothing more than a social disability that any quirky nerd can fit into. Afterall, every quirky nerd has difficulties in social interaction and usually a preoccupation in particular subject areas.

The fallacies continue to include that nonverbal Autistics are mentally retarded. That “Aspies” when put with “real Autistic” students have lowered self-esteem. That “real Autistics” fail to gain receptive and expressive speech. That no Autistic can have positive outcomes in life, be a police officer, learn to cope with their surroundings.

I wrote a letter to the editor and encourage you to do the same. I’m going to wait to post my letter until I’m certain that they are not going to post it, or after they post it. But I want to take a minute to dissect the Asperger’s fallacies. I think the others are pretty easily recognized as just evil, but the Asperger’s fallacies are what contributes to most of the problems in the new DSM 5 criteria and the general bias many feel to say Asperger’s isn’t really Autism.

1. A social disability is not a communication issue. In the Steinburg piece, he talks about communication issues like they are only expressive and receptive speech. I wonder if he’s aware that there are pragmatic and semantic language issues as well. Often, this is where we seem to lack. Even children who had no speech, but gained it and reproduce is ‘accurately’ tend to have pragmatic and semantic language issues. This is not something that’s an “Aspie only” trait.
2. A social disability is accurate enough for many “Aspies.” I’ve met many Autistics, especially women, who were diagnosed with a social disability. It’s commonly known as either Social Phobia or Social Anxiety Disorder. But to say that this diagnosis is encompassing of an Autistics difficulties, most of us will tell you is yet another fallacy.
3. “Aspies” don’t have any other traits in common with “real Autistics.” We apparently don’t have sensory issues (finally acknowledged in DSM-5), or motor deficits, or executive functioning issues (both lost in current diagnostic criteria). We apparently don’t stim like real Autistics. We apparently all have appropriate self help skills as well. We apparently have no problems with adaptive living skills.
4. Deficits in youth that don’t make it to adulthood means that I’m not really Autistic. In the Nugent piece, he talks about the fact that he used to speak oddly. But as he got into adulthood, he recognized the issues socially around this and stopped. One of my favorite sayings seems to fit well here. “Insanity is doing the same thing over and over again and expecting a different result.” Everyone learns from their mistakes. Everyone. To think that just because you learn to cope or learn traits or learn to not do something means that a diagnosis is inaccurate. That’s basically saying we should stop all interventions on Autistic children because they’ll never learn to cope or learn the right way to do something. Just because you self-taught rather than having a professional teach you how to do something doesn’t mean those symptoms never existed.

I can think of more, but think this is plenty for now. Feel free to continue the discussion about the other fallacies in either piece.. I’m not going to talk about the repercussions of these pieces as I believe it goes without saying that they are  both damaging.

BEFORE YOU READ ANYTHING ELSE:

Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.

Last paragraph from the article below

***WARNING: LONG POST IS LONG. IF IT’S TL;DR, I UNDERSTAND. THE ABOVE IS THE MOST RELEVANT PART.***

Yesterday’s NYTimes article is definitely not the worst propaganda to come out about how we’re either overdiagnosing, or how DSM-V will kill kittens, or how it’s all about the money, but it seems to have created the largest response I’ve seen yet.

I want to paint you some pretty pictures to illustrate why Volkmar’s “data” from his “study” (link not to the “study,” but where it’s referred to as a study)that no one has read nor has it been published nor is it going to be published.

(SOPA and PIPA supporters: I do not have permission to reproduce this photo so I’ve kept the link to where I got it rather than putting it on my own server.)

Hey look! We have some apples.

Red Delicious (Autism), Granny Smiths (Asperger’s), Yellow Apples (PDD-NOS), and Others (Rett’s and CDD)

Data:

Red Delicious Apples are: Red, Have a Peel, Have a stem, Has several seeds at core.

Granny Smith Apples are: Green, Have a Peel, Have a stem.

Yellow Apples are: Red and Yellow, Have a Peel, Have a stem.

(I can’t tell you data used has not been released.)

Diagnostic criteria match the above.

Diagnostic criteria change.

To be an apple:

1. You must have a peel and a stem. (You have to have communication challenges.)
2. You must have seeds. (You must have social challenges.)
3. You can either be tart, sweet, or somewhere in the middle. (You may have restrictive behaviors, interests or activities.)

Oh dear. It seems that Granny Smith Apples and Yellow Apples no longer meet the criteria to be called apples.

—-

I can’t confirm this as stated above because the data and the way it was utilized has not and will not be shown. Volkmar has said he will be doing a large sample later in the year, but that will result in different results because it’s not the same data points.

But let’s look at the discoveries made about Autism Spectrum Disorders in the past 2 decades (19 yrs to be honest). Heck, let’s look over the past decade. Did you know we can see signs of Autism sometimes as early as a year and a half? 10 yrs ago, most children weren’t diagnosed until 3-6 yrs old unless they showed multiple traits. At that point, we didn’t see traits in children diagnosed with AS until anywhere from 6-18+. Now I know parents who have had their kids diagnosed with AS at age 2-4! Why? Because we know even more about Autism, how it presents, and numerous traits that were considered “fringe” 20 yrs ago (Sensory integration, anyone?).

—-

Does that mean there aren’t things wrong with DSM-V? I don’t know. I like what it has become. I agree with multiple people that it doesn’t show all of our traits, but I don’t think that kills the criteria. Have you seen the criteria, btw? That was a lot of the big scare yesterday.. Apparently a lot of people were trying to access the DSM-V page because it took me over half an hour to even get to the home page, let alone the ASD page. Take the currently listed criteria:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

 

I can see some people complaining about D, but don’t really care about that as I do believe that ASDs are disabilities. I know some people are worried about going back to the late diagnosis that A will lead to, which I think is more than appropriate. I know adults are worried that because of their ability to mask means they can’t get a diagnosis, but that’s not really a *new* problem.

Like I said on a list today:

It’s no different than teaching an Autistic child to mask. Does that
mean they’ve lost their diagnosis? (I know, that’s a question most
parents will argue.) The only difference is that I wasn’t taught by a
behaviorist, OT, SLP or other professionals.

Except, when it’s taught by professionals, it’s usually called “coping strategies” or “intervention.” But as said, this is a current problem.. And I think it has to do more with professionals not understanding adults can learn coping skills and sometimes there is not going to be any data to prove that they originally didn’t have those skills. These are what I call BAD PROFESSIONALS. Of COURSE an adult doesn’t present like a child, because, they aren’t a child!

Basically, THE SCARE IS OVER NOTHING. The release sent out by GRASP even shows how it’s important to look at ALL the details. (Ya know, like that the current criteria listed was listed January 26, 2011… and we’re currently in 2012… and we haven’t even hit January 26 yet.) I know not all the details are available, but I think that’s due to the fact that Volkmar is INTENTIONALLY using scare tactics. It’s not like his views on the subject of removing Asperger’s aren’t clear.

The following is a Call for Papers, as the title says. However, I am not calling on any parent to submit a proposal. I’m specifically asking that Autistic parents of Autistic teens or adults think about submitting a proposal. If you feel you need help submitting a proposal, please let me know and I’ll be happy to either help you myself or connect you with someone who would be willing to help you.

——————-

Call for Papers for a Special Issue of Narrative Inquiry in Bioethics: Narrative Symposium: Parenting Children with Autism Spectrum Disorders During the Transition to Adulthood

Narrative Inquiry in Bioethics

A Journal of Qualitative Research

Edited by Kelly Dineen, JD, RN & Margaret Bultas, PhD, RN, CPNPPC

Narrative Inquiry in Bioethics will publish an issue devoted to personal stories of parenting children with Autism Spectrum Disorders (ASDs) during the transition to adulthood. The stories should give readers a sense of what parents find rewarding as well as challenging during this time. Stories about any aspect of the transition are welcome, ranging from navigating the health system to romantic relationships. We want your true, personal stories in a form that is interesting and easy to read. In writing your story, you might want to think about:

• How did available supports or services change during the transition period to adulthood?
• Do you think the transition to adulthood has been affected by your child’s level of functioning or other health problems?
• What do you or your child disclose to others about their disability?
• What advice would you give to parents of younger children with ASDs about the transition?
• Did you obtain formal decision making authority (e.g. guardianship, conservatorship, power of attorney) for your child when they turned 18? Why or why not?
• What are the most surprising issues you encounter now?
• What do you think is important to share with others about the transition to adulthood for individuals with ASDs and their parents?

You do not need to address these questions-write on the issues that you think are most important to share with others. You do not need to be a writer, just tell your story in your own words. We plan to publish 10 to 12 brief stories (800 – 2000 words) on this topic. Additional stories may be published as online‐only supplemental material. We also publish two commentary articles that discuss the stories in the journal.

If you are interested in submitting a story, we ask you first to submit a 300‐word proposal-a short description of the story you want to tell. Please include a statement about 1) your relationship to your child or children (mother, father, other parenting role), 2) your child’s diagnosis (e.g. PDD‐NOS, Autism, Asperger Disorder), 3) the age of your child now and the age at diagnosis or treatment for symptoms, 4) the main issues you propose to address.

Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com.

We will give preference to story proposals received by Jan 2nd, 2012.

For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and privacy policies, visit our webpage with Johns Hopkins University Press at:

http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html

Every issue of Narrative Inquiry in Bioethics will be available electronically to over 1,000 institutional subscribers via ProjectMUSE.

I DO NOT SUPPORT AGE OF AUTISM

Edited for my glaring mistake. (Reversed names)

I felt it was needed to place that disclaimer at the top as I know the title could lead one to believe I support them. I went for the sole purpose of planting the seed of doubt in parents who may have been on the fence. I had 3 invites on Facebook to go, so I took the opportunity even if it meant my sanity (lol, just kidding!).

Dan Olmstead started by talking about Occam’s Razor. For those that don’t know, Occam’s Razor:

is a principle which generally recommends selecting the competing hypothesis that makes the fewest new assumptions, when the hypotheses are equal in other respects.

OR

simplified:

Of two equivalent theories or explanations, all other things being equal, the simpler one is to be preferred.

To put it short and succinctly, they believe that mercury is the simpler explanation. I don’t think they read the actual principle, as you will see later on in this piece. They compare Autism to Crop Circles to make their point of Occam’s Razor. That because genetics is complicated *They showed a slide of the complexities of genetic research into Autism* that it is more like the theory that Aliens created the Crop Circles. However, they equate Vaccines and Mercury to the two drunk guys in a truck creating them. (Note: I thought that was pretty funny that they called themselves two drunk guys.)

They then went into the fact that Kanner was the first case studies. They gave two theories why these were the first case studies:

1. That Kanner was such a genius that he finally recognized the disorder.
2. That Kanner was witnessing the first ever Autistics.

They, naturally, would believe the second. However, I propose a third theory. That there was literature on the subject dating into the 19th century which did in fact show Autism, but with no actual label placed on the characteristics. (Note: Again. They didn’t read the actual principle of Occam’s Razor that the least assumptions is the accepted one.) They go on to state that by the 1930s there had been in all of human existance been 100 billion people roughly. That if there were that many people, then surely we would have seen the 1 billion some-odd Autistics. (Hrm.. Could it be that before 1900 that life expectancy was less than 40 yrs of age? Or that many of the disabled were put into institutions? Or they went on to have happy adulthoods like happens even today?)

When it came down to it, they didn’t just blame vaccines, but mercury in any form. They started out explaining mercury and arsenic as treatments for syphilis. Then said how the researchers into syphilis treatments went to making biological weapons during WWI. Then when the war was done, that’s when they came out with thimerasol and ethyl mercury that was used as an antifungal in plants and trees. I think we all see where this is going. Mercury was put into antifungal form for crops and lumber, then of course, thimerasol in the first inoculations.

They then showed us how 8 of the Kanner 11 had been exposed to the mercury. Most of it is pure conjecture, but I do agree that the two parents that worked with the antifungal powder (one they can prove researched it, which is more than they could say for the others) could have easily brought it home. But this assumes of course that the first 11 were the first 11 in existance. The whole basis of their book and argument (as said by them!)

They then went into incidence rates rising. Lots of charts to show when incidence rates rose. Some more to talk about prevalence with special interest spent with Brick Township, NJ. It was all rather boring by this point to me. Same old arguments.

The Q&A

(This was a question during the end of the presentation and not part of the actual Q&A.)

Person 1: “Didn’t they take thimerasol out of vaccines?”

Blaxill: “No! It’s still in the flu vaccine which is given to pregnant mothers and babies as young as 6 mos.”

Me: “That’s not true. The one before age 2 does not contain thimerasol.”

Blaxill: “Yes it does.”

Me: “No it doesn’t.”

Person 2-5: “<I’m feeding your ego>

All the while, I have my hand raised. Blaxill keeps pausing at it, then turning to call on someone else. Eventually, Olmstead sees my hand and asks me. Sadly, I only got two questions in, but they were:

1. How can you say there was no Autism prior to Kanner when Dr. Down (of Down’s syndrome fame, 19th century) wrote about very distinct Autism characteristics?

• There may have been characteristics, but you can’t say that it was Autism because they don’t present particular cases.
• Europe was in the industrial revolution and this was the first time Down’s was reported.
• It might have been Fragile X and comes from the same time.

(Basically, just because it looks like Autism, smells like Autism, and quacks like Autism doesn’t mean it’s Autism. It could have been Down’s and Fragile X babies showing Autism characteristics. And it’s quite possible that Down’s and Fragile X started because of Europe’s introduction to the industrial revolution.)

2. Can you turn it to slide #26? Which one is it? You had numbers, can you switch it? Describe it and we’ll know what you’re talking about. The one with prevalence from around 1950 to present day. Yes? (Me getting annoyed that he wouldn’t switch it for those WITHOUT photographic/cinematic memory!) What do you say is the reason for the rates changing? I noticed the incidence rose after DSM revisions (~1984 and ~1995).

No. We went with current DSM criteria. (Well how are we supposed to know that if you refuse to go back to the slide and show us your data?)

At this point, he cut me off saying he needed to get to other people’s questions. I had several other questions:

1.  What is your explanation for the rate “increasing” even with no thimerasol?

2. What do you think of the survey out of England that shows rate of Autism in Adult Men to be roughly 1%? (Not including anyone who had mental health or were institutionalized)

3. What do you think you’re doing by saying Autism is either defective or sick? What do you think how you affect those on the Spectrum by characterizing it like that?

4. Why do you think that Autism is just seen as “quirky” and “antisocial” adults? Do you realize there’s a lot of us who weren’t diagnosed until adulthood who are significantly disabled?

5. What’s your explanation for the same data being shown in Asperger’s studies as Kanner’s studies done roughly at the same time? Or the text that shows Asperger describing Autism in the early 1920s?

—-

The dinner afterwards ended up me talking with Olmstead, a close acquaintance and another “Warrior Mom”. I finally got some of them to concede that at least in my family, it does seem to be genetic. Olmstead asked what my dad did, I can only assume to figure out how I became AS and my brother ASD.

I didn’t get home until 11am. I couldn’t calm down until 1am. And I woke up at 7am. While that’s plenty early for most, it’s not for me. So I’m leaving you all here. Hope you enjoy my wrap up of last evening.

I do apologize for the delay in getting this out. I have been working hard unpacking, with physical therapy, at the boys’ school, and trying to find sources to get Daniel an iPad.

When we left off, I presented you with apps to help children with Special Needs. Some of the suggestions were for apps made specifically for this population, and others that are meant for general use. So I hope that you all found those apps useful.

Today is more for the Autistic parent reading this blog. These are apps I either use, or feel would be useful for people with other skills sets than myself. While some of these may be used in children and teens, I feel that have greater appeal to adults.

1. Round to It – ($2.99) – This simple To Do app has multiple list support, options for creating gift lists, jotting down notes, and emailing those lists. It also shows things that are overdue and upcoming. So if you have trouble with executive functioning, it makes it really simple to look at and prioritize.
2. All Done! – ($1.99) – Another To Do list app. I think this is more for people who have a hard time with a lot of bright colors and getting overstimulated. I prefer the color options to Round to It, but the neutral tones with this app certainly will appeal to other users.
3. Relax – ($2.99) – This one is going to be useful for those of you who get overly anxious. It gives you a scene to look at and relaxing sounds to go with it. There are a variety of options (9) for whatever scene you find relaxing. They also update it with new scenes, including accepting requests from users.
4. Groceries Grocery List – ($0.99) – Probably the most ingenious app I have seen yet! This app lets you customized to your local grocery store and price! It has commonly bought groceries, gives you total cost of the groceries you need, and flags coupon or sale items. Absolutely amazing to me!
5. iPrompt – (FREE) – This is more for those of you who do any speeches or presentations. It’s a teleprompter. I love this option as I tend to shuffle and shake pages when I try to speak. So having this as an option is rather nice. It even has the option to control the speed at which your text scrolls, so no shuffling or pushing your pages to find where you’re at. Love this app, especially with as many speaking/listening sessions as I’ve attended thus far.

These are all I have for “adult only.” I’ll bring you another installment of There’s an App for That! (Everyone Edition) later this week. Hope you enjoy these!

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

—

Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

—

Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.

As most are aware now, DSM-V proposed changes were released today. I’ve had a chance to look over the criteria changes for Autism Spectrum Disorder.

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

I look at this from both an adult stand point and a parent stand point. My primary concern is with Criteria 1b. Social reciprocity can often be for children not noticeable until later in years. This can possibly lead to a lower rate of diagnosis in those children in the early years. I suspect though, that most children that don’t show the difference are probably not diagnosed until later at this point anyways.

But as an adult, I know the rules of social reciprocity. If someone does something nice for me, I must do something back. If someone compliments me, I should also compliment them. I can perform these responses. Whether or not they are learned or out of genuine feelings is where the problem lies. As an adult that didn’t get diagnosed until I was an adult, I can see where other adults that may seek a diagnosis would fall through the cracks on this one. Many of us have learned and adapted our skills, but still have other areas of concern.

I can honestly say I have a hard time making and keeping friends. Only those that have stuck by me out of sheer determination from their point of view are the ones I keep. When I try to keep track of friendships, I ultimately fail. And again with the 1a, I know there are times when I miss nonverbal cues. It’s the idea that you have to meet all 3 that is troubling to me. Especially since it’s all speculation on the part of the diagnosing party whether this is a learned response or a genuine feeling.

However, I am very happy to see the addition of Sensory behaviors added. My youngest certainly doesn’t do any of the stereotyped behaviors any more, but has more than enough sensory behaviors to make up for it. This addition I think will help a lot of parents that are on the fence. Not seeing the spinning or flapping hands no longer means that you ‘might’ have a child with Autism.

Amongst the controversy from this past week (RE: “I am Autism.”), a very intriguing, but startling question was posed. “What will happen when [/if] Autism Speaks folds?”

I don’t expect them to fold. I think they will survive with the parents that cling to them now. But I think they will damage a lot of their credibility along the way. What will happen after that? Some parents that I’ve come in contact with say, “Well, if you don’t like them, donate your money else where.” or spout something about how no one else is bringing awareness.

I posted earlier this week about I am Autism dot ORG. We have been discussing what we can do to really help get it started. Suggestions have rolled around about needing a parents section. Not AS parents, but parents of ASD kids. Something that has meaningful resources for parents with a friendly Neurodiversity atmosphere. I’ve said I would be happy to help contribute. This is one way to help bridge the gap.

I’d like to see a lot more than just this happening though. Where can families put their money? ASAN is a worthwhile place that I like to support when at all possible, but I must admit, I do not see a lot of NT parents donating. Autism Society of America has been a decent place to turn, but the more Autism Speaks reaches, the more it seems ASA associates with the same mentality. Don’t even get me started on National Autism Association or The Autism Science Foundation with their  for that matter.

My biggest want out of all of this is to see more assistance go to AASPIRE along with bolstering an advocacy group such as ASAN. There are a lot of ways to do this, but I think for all involved, it is a worthwhile initiative. My greatest hope is that we will be able to reach and help families with Autism.

Source: NHS Information Centre

Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 percent of the adult population had ASD. Published childhood population studies show the prevalence rate among children is also approximately 1.0 percent.

This is the most important part of the information published. The implications of this study are far-reaching.  I’d like to look at a few of them in a bit of detail.  Subjects such as services, vaccinations, genetics and sociology come to mind. I hate to start with the subject of vaccinations and biomedical theories, but it is a very important subject matter.

I have faced many parents who have adamantly said I must not have Autism for one, and for two that their children are suffering from toxicity. I’m sure others have as well. This study clearly shows that the rate is the same across the board. Since vaccinations have only recently (past 20 years) been so widely used, there should be an increase in the rate.

I must say though, that the vaccine implications pale in comparison to needed services. This shows we are not getting much support, at least in the UK, and I believe not in the US either. We need more support to get it through college, as the amount of education is low. We need support in relationships, or else, the rate of being single wouldn’t be so low. Job placement assistance, financial planning, so on so forth. I read somewhere after this, “If the rate is so high, then why do they continue to live?” Basically using survival of the fittest and natural selection as a means to try to explain how there is still a high rate of autism. The fact remains that we are, for lack of a better term, mating and reproducing. I’d much rather a world where my kids can get assistance, if they need it, than to live alone, with no education, and a low paying job.

Which brings me to the sociology of all this. If there is such a high rate of adults who have the most part went undiagnosed, what does that mean of our impact on society? Are we being accepted or cornered into a homes? Is there adequate means to promote social awareness for not just the children, but adults as well? Social awareness should really be a two way street. We have all adapted quite a bit over our life times to be where we’re at today. I would like to see more socially aware peers. I feel like I probably go overboard telling others of Autism just so I know there is awareness. If I don’t say something, who will?

I hope this all has given you something to think about. Hopefully we will see more studies like this to come out.

We are writing to you on behalf of the Autistic Self-Advocacy Network. ASAN has partnered with researchers at multiple universities to create the AASPIRE Gateway Project (www.aaspire.org/gateway). The AASPIRE Gateway Project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance. We are excited to be involved in research that is conducted with us, not just about us. The AASPIRE Gateway Project is recruiting participants with and without disabilities and participants on the autistic spectrum. You can find more information about the project in the announcement below. We would greatly appreciate it if you could forward information about the AASPIRE Gateway Project to anyone who may be interested in participating.

Regards,

Ari Ne’eman

Founding President

Scott Michael Robertson

Vice President

Board of Directors:

Paula C. Durbin-Westby

Meg Evans

Dora Raymaker

The Autistic Self Advocacy Network

1660 L Street, NW, Suite 700

Washington, DC 20036

http://www.autisticadvocacy.org

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Participate in the AASPIRE Gateway Project

You are invited to participate in a continuing online research project called the AASPIRE Gateway Project. This online research project is conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspireproject.org) in collaboration with Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network.

The AASPIRE Gateway Project is recruiting participants with and without disabilities, and participants on the autism spectrum, for a series of continuing online studies on topics such as health care, Internet use, online sense of community, identity, problem solving, and perspective taking. The goals of the online AASPIRE Gateway Project are

(1) to collect the Gateway Survey data;

(2) to use the Gateway Survey data to invite eligible participants to AASPIRE’s continuing online research studies; and

(3) to use the Gateway Survey data in AASPIRE’s continuing online research studies.

You may participate in the AASPIRE Gateway Project and contribute to continuing AASPIRE research studies if you are at least 18 years old, and you have access to the Internet.

The first step in joining the AASPIRE Gateway Project is completing the online AASPIRE Gateway Survey. The AASPIRE Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities such as writing with a pen or pencil, and (c) information about your personal preferences regarding interests, habits, and social interactions. Completing the AASPIRE Gateway Survey will take approximately 20-40 minutes. In return, you may choose to be entered into a drawing for a 1 in 25 chance to win a $25 gift certificate to Amazon.com or to receive 1 extra credit point in your introductory psychology class if you are a student at the University of Wisconsin-Madison.

Adults who identify as having a disability and adults who identify as being on the autistic spectrum are especially encouraged to participate in the AASPIRE Gateway Project.

If you’re interested in participating in the AASPIRE Gateway Project, or would like to learn more about AASPIRE or the study, here are three ways you can get started:

1) Go to the study’s website at www.aaspire.org/gateway.

2) Send an email to info@aaspireproject.org.

3) Make a telephone call to Christina Nicolaidis, MD, MPH, at (503) 494-9602 or Morton Ann Gernsbacher, PhD, at (608) 262-6989.

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison

Katherine McDonald, PhD, Portland State University

Dora Raymaker, Autistic Self-Advocacy Network