NeuroTribes Review

A couple of months back, I was sent an email asking whether I wanted a free copy of Steve Silberman's NeuroTribes.  Being something of a book hoarder, I really couldn't refuse.  I've been looking forward to reading this book since I've heard of it coming out, and offered to write a review.  So, for the sake of transparency, all I've gotten out of this is a free book and a voluntary obligation to write a review.

Cause I want to talk about this book. I really want to talk about this book.  This book deserves to be talked about.

I got my copy, oh, a week or so back, I think. Early August. (Yeah, I'm bad on time)  It took me some time to work up the nerve to open it, and then it took me longer than I expected to read it.  It is a subtly and surprisingly packed narrative written in and around various mini-biographies, following a single thread throughout history: the diagnosis of Autism as we know it.

I feel like there was a lot of material that Silberman has been working through, and chose his words with care to say the most, to show instead of tell.  It is a rich weaving of history, some of it painful and dark, and does not shy away from that.  Some of this I knew about beforehand, as part of my own experiences researching and being a part of Autism history, and some of it I could only guess.  I know that for those who are not prepared, it can be very disturbing.  Even prepared, the stories shared in NeuroTribes can be disturbing.

Silberman covers a lot in the pages, including treatments used on us, the theories prescribed about us, and how there is this fight to recognize autistic people, all autistic people, as autistic.  Complete with how such things like a diagnosis impacts individuals, and a glimpse into the beginnings of autistic culture, both before and after the advent of the Internet.

But this is our history.  And this is probably not the last book on Autism history, but is only a part of our past.  No, as I'm sure many of my community will agree with me, it is not complete.  This is a slice of where we've been, condensed into a nearly 500-page book (the epilogue ends at page 477).  That couldn't have been easy.  Especially since I know there is a lot more material that Silberman has from writing NeuroTribes, waiting to written and shared with the world.

Most importantly, there are parts that I didn't know about, new information about our history, indications and answers to that ever so annoying question "where are the autistic adults?" As Silberman shows, we have always been here, in the past, in the present, and in the future.  After all, some of those incomplete chapters, aren't we still writing those?

Let's go make the next volume of Autism history!

Citizen Autistic

I unfortunately missed the great crowd sourcing campaign for the documentary "Citizen Autistic" (William Davenport, 2014), released this month.  However, I was just contacted by Cinema Libre Studio with their press release and a chance for an early online viewing to review.  How could I say no? 

Now, my review isn't going to be unbiased. I'm an autistic activist who works alongside and has met a good number of the people interviewed in the film. I sort of have a vested interest, even though I'm in Canada and most of the specifics take place in the United States.  However, I do believe that there is an international effect to greater disability rights, and to Autistic rights, and so this film is part of that dialogue.  

Onward to the film!

At about 60 minutes long, "Citizen Autistic" is rather brief, and of course, not going to cover in complete detail every and all issues in the Autistic rights movement.  It does cover some of the current contenders.  

It opens appropriately with the National Day of Mourning in Washington, D.C., and goes on to cover the Judge Rotenberg Center, Autism Speaks, and the discourse between parents and autistic adults in advocacy work.  

Some points are also brought up are the similarities between the autism rights movement and gay rights movement, as well as bringing our rights into the greater disability rights movement, as well as how the Autistic community could possibly look towards Deaf culture and community as a model of operations.   I liked how autistic people interviewed presented different views, various perspectives regarding the rights models, but otherwise pretty much agreeing that this is an issue of human rights. 

Points about parents and autistic adults were covered with AASCEND, which was a very interesting piece to watch, and definitely frames the question of how the so-called conflict and division as very much a question of government funding, as well as a matter of being allies without taking over the movement. 

Lastly, in some of the final comments, Ari mentions using one tenth of research funding to fund AAC devices, for communication that'll improve quality of life.  That's just one tenth from research, diverted to practical applications that affect autistic lives. 

So those are the main points that really stood out to me.  It's a short film, as I've mentioned before, but I think it does a really good job covering various perspectives in the time frame that it has.  Are there more perspectives in our community? Are there more issues that affect us?  Of course, and this shouldn't be the one documentary about autism advocacy that gets made; why not make more?

But I watch this, and I nod along, because I see my community, I see my fellows represented, I see our voices represented, and I have hope.  I have hope that this is just the start of our representation.

And I'm so going to go order a couple copies of the DVD now.

An Autistic at IMFAR 2012

I finally got my article done on IMFAR 2012.  Whew!!! 

It is quite long!  Instead of dividing everything up, I did one big article on Storify, because then I could snag the tweets I did throughout the week. 

I'm very sorry it took so long to get this done; I hope it's worth the wait. 

Because the Storify format can cause lag on people's computers, I'm just going to link to it on here. 

An Autistic at IMFAR 2012

 

Response to Review of Social Assistance

In Ontario, the Social Assistance programs are under review.  The Commission involved is in charge of "examining social assistance in Ontario through engagement, research and analysis to provide the government with a concrete action plan to improve the system for the people who need it."

There are comment and response forms for people to reply and contribute, found on the Commission for the Review of Social Assistance in Ontario website.  


Being a recipient of ODSP, I contributed my own comments, as seen below:

When determining social assistance rates, the cost of living needs to be considered.  Depending on location and the fluctuation of the economy, the cost of living changes.  In such cases such as the present, when the cost of living rises, so should the rates in order to ensure that recipients are able to afford necessary items such as food, clothing, rent (which for any higher quality of life is much higher than the amount given for rent with ODSP), as well as be able to pay the bills. 

As a recipient of ODSP, I find it a challenge to find work that makes it worth the deductions from social assistance.  Part of the problem is that it seems that the deductions are taken off with the assumption that any income we make in the previous month will be used for the next month.  I can tell you that it is not.  Often, because ODSP does not adequately cover all the costs of living, recipients who are working use income in the same month that they earn it.  This means that there is no saving for the month ahead, and the deductions actually serve to create a cycle of debt and poverty that is increasingly harder to break.

Also, with the current economy and job market, it is extremely difficult for persons with and without disabilities to get a job that would lead to coming off of social assistance.  The amount paid by most jobs available are not sufficient to take the place of the deductions in a person's social assistance and so there is a constant need to find a better job, leading to an inconsistent history of employment, as well as an increased risk of a person burning out and becoming depression and/or further disabled mentally. 

By the time a person is able to find a decent paying job that does not cost a huge amount of emotional stress and is able to gradually have social assistance withdrawn, the person is in quite a bit of debt due to the cycle created by earning deductions in social assistance. In such a situation, it is near impossible for a person to save for the future, either for needed items for a new job, or items to enhance quality of life, or to put towards miscellaneous costs such as over the counter flu and cold medications as well as other medical costs that are not covered by benefits, or towards retirement in old age.

The Registered Disability Saving Plan is an attempt to allow persons with disabilities to save towards their old age, however, there are some concerns about being able to get accounts registered.  For accounts to be registered, a person must have the Disability Tax Credit, which has a different definition and set of requirements than ODSP.  What is puzzling is the mix of seemingly specific yet vague criteria needed on the applications.  What is needed is a standardized definition of disability so that ODSP recipients applying for the tax credit in order to register their RDSP is able to be approved and thus be granted financial security for the future by saving what they can afford from jobs, especially if they are able to get jobs that just barely gets them off social assistance but not improve their quality of life.

What is also problematic is how education is handled by ODSP.  ODSP is suppose to not deduct earnings if a recipient is taking post-secondary education classes.  However, there are times in which earnings are deducted despite the recipient informing and even providing documentation of their student status.  This is especially the case during the summer months, when there are also classes available for students. 

Between being unable to save for the future, and being unable to save for post-secondary education that may especially prove to lead to higher-paying employment, ODSP often hinders the efforts of recipients to gain adequate employment to no longer require social assistance and be able to improve one's quality of life.  Rather than aiding people, social assistance as it currently operates perpetuates and increases poverty conditions for low-income persons, families and disabled people.

DNA Testing and the Future of Autism

I was going to post this a lot sooner.  Like, early June.  However, I got caught up in three of my poems being accepted into the Perspectives anthology, and painting artwork.  So now I finish this. 
 
I have recently become aware of several news articles concerning new findings on autism genetics on this study just released. The Globe and Mail article, while short, does address a few key points.

The first is that they have not found specific genes for autism, but rather they speculate that they have found that out of their 996 ASD individuals had a higher rate of copy number variants. However, the genes and segments of DNA affected was different for each individual, and as study co-author Peter Szatmari says they have found "not a cause... but a profile of genes, a pattern of susceptibility".

Second to point out is that the rate of this pattern was found in 10% of their case studies, meaning that they might be able to predict autism in 10% of the autistic population, if the raw data is correct. However, current data is still unclear as to apply this to diagnostic methods, so they caution against any marketing schemes out there.

Both the study's scientists and the articles' author addresses the potential fear that current prenatal diagnostic tests could be used for family planning and abortion, a topic which I'm thankful that they covered. They also stressed that the genetic testing is not to eliminate autism, but to provide earlier intervention and supports.

Personally, I'm not entirely sure that developing a prenatal test is such a good idea, even assuming that they are able to predict autism in more than 10% of the autism population. Of course, I'm not sure the details involved in a prenatal test, but it seems to me that it would be more cost-efficient not to have a prenatal test and have a diagnostic test if a child is suspected of being autistic.

I mean, think about it, with the potential fears of abortion aside, is it really feasible to prenatal test every child?   A bit more reasonable is to test in families with a family history of autism, or even to test if a child is showing autistic characteristics.

There is a strong emphasis on early "treatments", "interventions", or even just putting supports and accommodations in place.  However, I think that the emphasis has gotten too strong.  While certainly a child may do better the earlier diagnosed, it is not a clear-cut prognosis.  It is not the end of a child's future if a child is diagnosed at age 3, and earlier diagnosis does not mean that a child will do better.  It depends on whether a child has the supports she needs as she grows and develops on her own individual development path, and the guidance of her caregivers. 

So what I'm trying to say is that I'm not against early testing.  I just would like to caution about how early testing is used and what it means for a child.  And of course, before filling a child's day full with skill-building, allow a kid to be a kid.

The Perspectives Anthology

I'm pleased to announce that the Perspectives Anthology: Poetry Concerning Autism and Other Disabilities is now available through Lulu.com.  The anthology is part of the Bards Initiative, in partnership with the Local Gems Press, which has this to say about the book: 

With poetry from over 50 poets, the Perspectives Anthology through the art of poetry, conveys different points of view or perspectives concerning the autism spectrum and other neurological, psychological, social, and communicative disabilities. The poems in this volume are from those with disabilities, by those with disabilities, about those with disabilities, as well as from the point of views of family and friends of those affected. Perspectives hopes that its poetry will convey not only understanding, but unity, and a sense that despite different perspectives and different ways of living life, we are all human. (source)

 Of course, while I very pleased with the project and anthology, I do have to disclose my own other interests in promoting it: I do have three poems in the anthology, looking at expressing the emotions of being autistic and disabled in the greater community. I do not, however, receive any compensation for any profits made from the book.

I submitted my work to the anthology because I agree with the mission of the project and felt that I could contribute my voice through my poetry.  From the reviews coming in about the anthology, it seems that we have accomplished our goal in creating a book illustrating the perspectives of people in the autism community, from autistics to parents and caregivers, in how we truly feel about ourselves and our place within the community.

Now we just need to spread our words to the world, and you can help by ordering a copy yourself.  Maybe after you've read it, you can donate it to a local library so that others can read it as well. 

Lauren's Hope Review

For quite a while, I had been wanting to get a medical ID bracelet.  An Autism card is good for events where, having trouble communicating, a person can slip out a card and hand it out.  For other situations, when I'm possibly unconscious, I want something on me all the time that's noticeable to paramedics.  Especially when I consider the medical issues I have and medications I'm on.

I've looked at medical ID bracelet companies, including the ones with the yearly subscription so that you practically have your medical history a phone call away.  I've looked at some rather fancy bracelets, some completely plain and utilitarian bracelets, and they were all either too much money or not what I wanted to wear on my wrist every single day.

But then I came across Lauren's Hope  and was genuinely surprised.  The bracelets are a bit expensive, especially for someone with limited funds, but are elegant and beautiful. They are designed so that you only need one tag that you can remove and use with many different bands.  Yes, space is limited on the tag, and you'd have to replace it every time that your medications get changed, but it's a lot cheaper than subscribing to a medic-alert type service.

I love my Lauren's Hope medical ID bracelet, and I hardly ever take it off.  So I highly recommend it; at least take a look, you might find something that catches your eye!

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The Propsed DSM-V Changes: Is it a Step in the Right Direction?

This was written by myself and Amy Caraballo for the Autism Women's Network. It is available on the AWN site here .

The Proposed DSM-V Changes: Is it a Step in the Right Direction?

Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available online for comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.

Diagnostic Criteria
Under the DSM-IV, each subcategory of the PDD spectrum was fairly specific in listing criteria for the diagnoses. However, despite that, many children who did not fit the subcategories of Autistic Disorder, Asperger's Disorder or Childhood Disintegrative Disorder were given the diagnosis of Pervasive Development Disorder - not otherwise specified (PDD-NOS). PDD-NOS has included many presentations of the disorder. Over time, the number of children receiving PDD-NOS has been increasing. It is not surprising that the DSM committee felt that something was amiss. "Not otherwise specified" is far from informative.

The proposed changes to the DSM-V include merging Autistic Disorder, Asperger Syndrome, Pervasive Development Disorder - not otherwise specified (PDD-NOS) and Childhood Disintegrative Disorder into the classification Autism Spectrum Disorder. Rett’s Disorder has been removed from the DSM and labeled a "medical disorder". While there are various opinions on the matter, many are extremely concerned over the vague diagnostic criteria in the proposed manual.

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.

Much of the concern is over criteria one (see above), as many of the deficits cannot be measured in a clinical setting. As most clinicians would be unable to observe children in their natural environments, much of the information used to determine diagnosis would consist of speculation and interpretation by unqualified persons such as teachers and others who work with the child. This makes the diagnosis subjective and dependent on the knowledge of individual observers.

Section 1.a assumes that the average pediatrician has adequate speech and language training in order to determine deficits in a verbal child. While the non verbal children may be easy to identify under criteria a, those without obvious speech deficits may fall through the cracks without proper evaluations by speech and language pathologists.

Other concerns relate to the age in which some of the criteria is appropriate. For instance, section 1.b requires a lack of social reciprocity. Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others. It is normal for very young children to engage in parallel play and thus typical children do not always engage in reciprocal play. Section 1.c indicates that the child must show deficits in peer relationships - something that is not always obvious in early childhood.

The manifestation of these difficulties may not be cut and dry. Often, like-minded children flock together. With the rate of Autism diagnoses rising some Autistic children may have developed peer relationships with others on the spectrum. Additionally, renowned specialist, Tony Attwood has found that girls have naturally higher verbal and social skills than boys which can often lead to missing the diagnosis under the old criteria1. Under the proposed criteria, these children would simply not qualify for diagnosis at all.

Since all three criteria are required to receive a diagnosis, it is easy to speculate that many children will not be diagnosed until well past early intervention years when or if they would show obvious deficits.

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

The wording for criteria two (see above) is not only very vague, but insinuates that these behaviors are undesirable. This is directly in conflict with the current mentality of concentrating on strengths as well as weaknesses. The proposed changes return us to negative stereotypes that define autism as a series of defects. Compounded by vague wording, criteria 2 fails to define what defines "stereotype", "unusual", "excessive" and "fixated". This lack of clarification allows those using the DSM-V for diagnosis, to rely on their own interpretation and definitions. As with criteria one, the diagnosis becomes subjective with what the diagnostician perceives as being usual, excessive and essentially typical behavior. Instead of clarifying, this criteria not only confounds the diagnosis, but is also contrary to defining autism as a widely diverse spectrum that has particular deficits as well as unique abilities.

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

Criteria three (above) appears to confirm the fear that young spectrum children will go undiagnosed. Data has shown that early intervention is key to helping Autistic children with potential deficits. Additionally, failure to identify children at an early age could cause severe stress to children who need accommodations to function in mainstream society. It has been confirmed that the earlier accommodations and interventions are put in place, the better the outcome for the Autistic person. However, under the new DSM-V criteria, it is likely that children will go undiagnosed until they are school age and beyond. Children who previously may have been diagnosed Asperger's Disorder and PDD-NOS could easily slip through the diagnostic cracks.

Finally, a large concern is by some in the Asperger's adult population who were previously diagnosed under the DSM-IV. While many of these individuals continue to fit the Asperger's Disorder under DSM-IV, there is concern that as adults, they will be "undiagnosed" under the DSM-V since they now do not present with the new criteria requirements. This presents a very real question; how will the currently diagnosed population fair through this change?

Autism vs. Asperger's
For various reasons, some feel that Asperger's should remain separate. Some speak of pride of being "Aspies" (a term created by the adult population), finding a sense of superiority and self-esteem in the distinction. Along with this view, there are those that feel that Asperger's includes a difference in communication skills and ability to adapt than that of Autistic Disorder. The mindset is that these differences mean that those with Asperger's are not the same as others on the Autism spectrum. The hard working advocates who have toiled endlessly to have Asperger's recognized as a valid diagnosis, see this as a step backwards from what they have worked for, and perhaps, are feeling that they have struggled for nothing.

Inclusion Issues
Under the new DSM-V, there is also a concern that people currently diagnosed as Asperger's will be automatically slotted into specialized Autistic community, and special education programs where they will be segregated from their non-disabled peers. This is a tribute to the prevailing mindset that those with the Autistic Disorder diagnosis are somehow "more disabled" than those with Asperger's. Additionally, this mindset is testimony to the current problems inhibiting proper inclusive programs in our public schools and communities. It appears that society is still more inclined to let labels define the supports and accommodations rather than individual needs.

Currently, the only diagnostic difference between Autistic Disorder and Asperger's has been defined by verbal skills and more specifically, a child's ability to speak. Using this model a person diagnosed with Asperger's is no less Autistic than a person diagnosed with Autistic Disorder. However, under the Individuals with Disabilities Educational Act (IDEA) qualifying diagnostic criteria, this distinction has often excluded Asperger's as an Autistic Disorder. For some, this has prevented access to accommodations, support programs and services that they need to remain stable or reach their full level of independence, both in schools and in the community.

Currently, U.S. states have used Autism, Emotional Disturbance and Other Health Impairment as the qualifying diagnoses for those with Asperger's Syndrome, but not actually Asperger's. Additionally, IDEA has a behavioral qualification which states that a child who has "behavior that impedes his/her learning or the learning of others" also qualifies for IDEA protections. IDEA is supposed to be "needs" based and not strictly applicable to diagnostic labels. It speaks more about the state of accommodations and specially designed instruction than the actual definition of Autism.

One solution to the problem of accommodations is the changing IDEA and other educational criteria by removing static qualifying labels (such as Autism, Emotional Disturbance, etc). Because IDEA does not use the DSM, it is unclear how the proposed DSM-V changes will affect a students ability to receive special education services.

Severity Levels
One unknown is what the severity levels of Autism Spectrum Disorder will look like in the DSM-V. Previously it was thought that Asperger's Disorder was the "highest functioning" Autism, Pervasive Developmental Disorder Not Otherwise Specified was next and finally Autism being the "lowest functioning" diagnosis. However, over time, it has become more apparent that the lines between these diagnoses are not so clear. While those with Autism may have lower IQ scores, it is not obvious how accurate these scores are, as those with the current Autistic Disorder almost always have severe verbal communication impairment.

It is thought by some that breaking down the new Autism Spectrum Disorder by severity may be a step in the wrong direction. Until there are standardized tools to accurately measure a persons ability to "function", severity is subject to speculation and interpretation. However, as there are no proposals published currently, it is too early to say what these severity levels will look like or whether they will exist at all.

Looking toward the future
While there is much scrutiny over what the DSM-V should look like, it is questionable as to why the Autism Spectrum diagnosis is remaining in the DSM at all. While there are many theories about the origins, it has been established that Autism is not a temporary mental health issue, but a life long neurological and biological issue.

Autism has been defined as a spectrum disorder which indicates there are many varied presentations. One could speculate that Autism, itself, is not the disorder and that other commonly co-morbid medical diagnoses are responsible for any impairment.

Many Autistics also have speech and language disorders, sensory processing disorders, fine and gross motor disorders, immune system dis-regulation, and learning disorders. These disorders do not appear in the DSM, but appear in the ICD (International Classification of Diseases) manual which is medical, in nature.

Would it be more appropriate perhaps to place Autism Spectrum Disorder in the ICD manual with the commonly co-morbid diagnoses? This would ensure that every person diagnosed with an Autism Spectrum Disorder is given appropriate interventions and support customized to individual needs. Attempting to find a "one size fits all" diagnosis seems unrealistic when not every presentation is the same. Indeed, doing so would likely alleviate concerns for covering all the diagnostic criteria in the DSM-V. While many Autistics prefer not to be considered diseased, changing the diagnostic process to the ICD manual is preferable because of the many co-morbid issues.

As it stands now, will these proposed revisions to the mental health diagnostic criteria cause more Autistics to fall through the cracks, as opposed to being recognized, and given the appropriate supports as soon as possible. Does the vague criteria reinforce the standard, narrow diagnosis of Autism, instead of reaching out to acknowledge the wide spectrum of Autism?

_{1. The Complete Guide to Asperger's Syndrome, Attwood}

(Disclosure: Corina Becker serves on the board of the Autism Women's Network)

B-Calm Sounds Review

If any of you wander over to my profile page here, you will see that I identify myself as being ADHD as well as on the Spectrum. So, I have problems with concentration and paying attention, alternatively randomly wandering off and hyper-focusing, and problems with some sensory issues. I may not be as sensitive as others on the spectrum, but I have my days where the smallest thing can distract me beyond reason and I get nothing done (batteries and spoons). Of course, this doesn't help my anxiety issues.

So I was really interested in B-Calm Sound when they were on the AWA Radio Show not too long ago. Okay, I'll admit it; I was skeptical. I've been in and out of anxiety therapy for a couple of years and for the most part, I've picked up a couple of breathing exercises, relaxation guides and alternating medications. I've also tried those nifty relaxation music tapes; I tended to turn them off since they were being the sensory aggravation. So you can understand I was initially skeptical about their AudioSedation tracks.

However, I was willing to give them a try. I browsed the site, looked over the sample clips, and asked about the "running shower" track that I heard about on the AWA show. I was interested in this particular track because I know from experience that I concentrate better while sitting in the bathroom with the shower going. However, it's not released yet, but lucky me, I get to review an advance copy. Woot!

So here goes:

My Review on B-Calm Sounds Running Shower as an Autistic and ADHD Adult

Since I'm taking courses, I decided to try the track out when working on my course work. So for a few days I listened while not taking my medication, and while I was taking my medication. Now, this is probably because of the difference between shower heads. I'm used to a stronger water flow, from both the shower and the faucet.
I'll also notice that during my initial testing period, I was going through a major mental block, so my concentration and attention, not to mention "functionality" was severely impaired, even on medication.

Description

The track is of a gentle, continuously running shower. When I put it on and started listing to it, I began to feel relaxed and more at ease. Actually, to be honest, when playing it at night, I started to feel sleepy.
I'll also note that the track acts as a filter more than a wall of sound. While the volume setting affects this, in general, I was able to listen to my parents, hear the dryer go off downstairs, and hear the doorbell while listening to the track. A slight side effect of it at this filter-type volume is that I would often think that it was raining outside.
Of course, that's if a person wants to use it that way. It's also very pleasant as a complete sound block.

Anxiety

So during my initial testing, which I gave feedback to B-Calm, I found that my anxiety was noticeably decreased, both with and without my medications. Now, it didn't completely eliminate the anxiety, but it did help me to relax, take a deep breath and keep things under control.

Concentration

I found that, other than relaxing me, the track did not do much for my concentration during my initial testing period. This may have been because of what I noted above, that I was going through a mental block. Also, as I continued to test out the track outside of the mental block, because of the type of work that I was doing while listening to it.

What I discovered was that as a concentration aid, the track had very little effects (both on and off medications) when I was doing work, such as writing assignments, articles, doing research and exercises. For that, it was useful for reducing and managing anxiety, but I saw no noticeable difference in my concentration.

However, I saw results when I started listening to the track when doing course readings and going through my lecture notes. It wasn't as strong as when I sit in the bathroom, listening to the tap in the bath running, but I could read and understand the materials easier. I saw a definite improvement to my concentration.

Conclusion

In conclusion, I would say that the track is very promising, as an anxiety reduction aid and selectively to help concentration, even by way of reducing stress. I think that there can be some improvements, such as a stronger "water flow" that would produce greater results, at least in myself, but as is, the track does act as a filter for stressing sounds and reducing anxiety. Personally, I am very pleased at the results that I have had with the track.



A note of caution for my readers, I would not recommend using this instead of medications or other treatments for anxiety. This is just a tool to help, not completely remove, and this is my opinion as an individual.

Amy Wallace and An Epidemic of Fear

I just sent Amy Wallace, the writer of the Wired article "An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All", thanking her for writing the article.

In my opinion, it is a straight-forward, strong no non-sense piece that examines the skepticism surrounding present-day vaccines, with a focus on Dr. Paul Offit and the threatening reaction from a part of the autism community, including the personal threats made by phone and mail, and the attacking comments about him by celebrity anti-vax spokespersons. It also takes a look into the facts about vaccines and the claims of the vaccine-causation groups in an honest and clear manner.

As Kim has pointed out on her blog post Doing Something Right: Conniptions at AoA posts have been made on AoA encouraging harassing Amy Wallace for her piece, which I need to point out, does nothing to over turn the view of them made in the piece. However, given the amount of research Amy Wallace has made into the situation, I don't think that AoA will be too successful in intimidating her. (Yes, I know that AoA isn't on the list of anti-vaccine sites that Amy lists, but honestly, I wouldn't be surprised if many of the membership is the same).

Either way, I applaud Amy Wallace for her strength and courage in the article, in writing a well documented and researched piece that doesn't hold back in presenting facts. Congratulations and thank you!

Another critique of Ginger Taylor

It was pointed out to me that Mrs. Ginger Taylor has made another uninformed post on her blog Adventures in Autism, in the form of her post Redskins Cheerleader Ambassador Suffers Neurological Damage from Flu Shot.

Now, I'm not refuting that Desiree Jennings is suffering from Dystonia. It has been noted that sufferers of Dystonia have near continuous pain, difficulty with mobility due to cramping and involuntary muscle movement.

What makes me question Mrs. Taylor's claims to be an educated woman with a Practicum Master's of Clinical Counseling is her question

So if this injury happened when she was 18 months old, before she had learned to talk or learned social norms, would she not be diagnosed with "autism"?

The answer, Mrs. Taylor, is no. The symptoms of Dystonia only are similar with autism is that there are repetitive movement. And I'm taking about real autism, Mrs. Taylor, not your supposed "immune-disorder-caused-by-vaccines-that-display-autistic-traits". You believe your son has an immune disorder; you should be calling it an immune disorder that has been misdiagnosed, not quoting it as "autism". Autism is, for the record, a very real neurological wiring of the brain. It has been noted by several studies now, that when doing brain imagery, the autistic brain is very physically different that the supposed "normal" or neurologically typical brain, with indications that the cause of differences would have to occur while a babe is in the womb, at the point of pregnancy, if I remember correctly.

Either way, Dystonia is still very different from an acquired autoimmune disorder or autism, which is clear if she had even bothered to even look it up in Wikipedia.

According to Wikipedia, October 17, 2009: under "Symptoms"

Symptoms vary according to the kind of dystonia involved. In most cases, dystonia tends to lead to abnormal posturing, particularly on movement. Many sufferers have continuous pain, cramping and relentless muscle spasms due to involuntary muscle movements.

Early symptoms may include loss of precision muscle coordination (sometimes first manifested in declining penmanship, frequent small injuries to the hands, dropped items and a noticeable increase in dropped or chipped dishes), cramping pain with sustained use and trembling. Significant muscle pain and cramping may result from very minor exertions like holding a book and turning pages. It may become difficult to find a comfortable position for arms and legs with even the minor exertions associated with holding arms crossed causing significant pain similar to restless leg syndrome. Affected persons may notice trembling in the diaphragm while breathing, or the need to place hands in pockets, under legs while sitting or under pillows while sleeping to keep them still and to reduce pain. Trembling in the jaw may be felt and heard while lying down, and the constant movement to avoid pain may result in the grinding and wearing down of teeth, or symptoms similar to TMD. The voice may crack frequently or become harsh, triggering frequent throat clearing. Swallowing can become difficult and accompanied by painful cramping.

Electrical sensors (EMG) inserted into affected muscle groups, while painful, can provide a definitive diagnosis by showing pulsating nerve signals being transmitted to the muscles even when they are at rest. The brain appears to signal portions of fibers within the affected muscle groups at a firing speed of about 10 Hz causing them to pulsate, tremble and contort. When called upon to perform an intentional activity, the muscles fatigue very quickly and some portions of the muscle groups do not respond (causing weakness) while other portions over-respond or become rigid (causing micro-tears under load). The symptoms worsen significantly with use, especially in the case of focal dystonia, and a "mirror effect" is often observed in other body parts: use of the right hand may cause pain and cramping in that hand as well as in the other hand and legs that were not being used. Stress, anxiety, lack of sleep, sustained use and cold temperatures can worsen symptoms.

Direct symptoms may be accompanied by secondary effects of the continuous muscle and brain activity, including disturbed sleep patterns, exhaustion, mood swings, mental stress, difficulty concentrating, blurred vision, digestive problems and short temper. People with dystonia may also become depressed and find great difficulty adapting their activities and livelihood to a progressing disability. Side effects from treatment and medications can also present challenges in normal activities.

In some cases, symptoms may progress and then plateau for years, or stop progressing entirely. The progression may be delayed by treatment or adaptive lifestyle changes, while forced continued use may make symptoms progress more rapidly. In others, the symptoms may progress to total disability, making some of the more risky forms of treatment worth considering.

An accurate diagnosis may be difficult because of the way the disorder manifests itself. Sufferers may be diagnosed as having similar and perhaps related disorders including Parkinson's disease, essential tremor, carpal tunnel syndrome, TMD, Tourette's syndrome, or other neuromuscular movement disorders.

And that's just from Wikipedia. Now, I know that quoting Wiki is not very academic of me, and if this was an academic paper, I would automatically get a 0 and possibly prosecuted for plagiarism. So, I took a look at the Dystonia Medical Research Foundation, on their What is Dystonia page, found this:

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom....

....Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

And because I'd like to remind Mrs. Taylor as to the diagnosis of autism, from The Geneva Center for Autism, autism is marked by (1) qualitative impairment in social interactions, (2) qualitative impairment in communication, (3) restricted repetitive and stereotyped patterns of behaviour, interests, and activities, (4) delays or abnormal functioning in at least one of the following areas, social interaction, language as used in social communication, or symbolic or imaginative play. You can find the complete DSM-IV criteria here.

Also, under the International Statistical Classification of Diseases and Related Health Problems 10th revision, Autism is under Pervasive Developmental Disorders (Chapter V. F84.0) as a Mental and Behavioural Disorder, while Dystonia, specifically Drug-Induced Dystonia is under Extrapyramidal and Movement disorders (Chapter VI. G24.0) as a Disease of the nervous system. You can look it up on the 2007 version here.

Therefore, Mrs. Taylor, the answer is "no". Dystonia would not be misdiagnosed as Autism.


So, dear Mrs. Taylor, next time you want to ask a question about an apparent similar disorder, do some research first. You'll cause less misinformation and confusion that way.

P.S. Mrs. Taylor, have you read the UK study that reports that autism rates in adults are the same as in children? This includes the full spectrum of autism, btw, for both rates.

Expanding Activism Styles on Genderbitch

I highly recommend reading the post Activist Modus Operandi: Methods of Communication.

You remember the post I made not too long ago about the Temptations of Activism? I divided activism into passive and aggressive, and gave a warning about activating in a way that hurts the cause. In the end, I linked to a couple of other blog entries about Trolls. One of those was to Recursive Paradox's Genderbitch.

She also posted an entry about activism styles, but divided the styles up into four methods: Nuker, Appeaser, Logic Bomber and Emoter. She writes about the strengths and weaknesses in each methods, the likely personality traits that contribute to each, and gives some guidelines to maximize the efficiency. You can read more of her post, but I've quoted those guidelines below.

1: Keep Your Group Mixed: Have Nukers, Appeasers, Logic Bombers and Emoters present within your activist network, working for the needs of your group. Make sure you have at least some switchers around and people who walk middle lines. Having someone for every context is always a good idea and will maximize your success.

2: Be Mindful Of Flaws: Make sure you are self aware and externally aware about the disadvantages of your methodology. Specifically Appeasers, who are in the most dangerous position of all. Nukers, Logic Bombers and Emoters can’t effectively be turned against their own as weaponized tools but Appeasers can. If you practice Appeaser methods, be extraordinarily careful that what you see as progress isn’t just you being co opted and used to silence Nukers and others or used to conceal other problems through lip service progressivism. Nukers clearly have to be mindful of intersectionality and their own privilege as well as allies with anxiety or conflict issues. And the other two need to be mindful of who they’re speaking to and whether they’re wasting energy.

3: Don’t Infight Over AMO’s: Seriously, this is a huge fucking one. The biggest advantage the oppressors have over you (no matter what group you’re in) is numbers. They don’t have to all agree and they can infight all they want. There’s more of them and they already have more power. We can not afford to. Now if someone is failing at 2 above, then yes, criticize them. But keep it in house. Don’t make public spectacles of it, don’t silence, don’t attack. The bigots eat that shit up. And more often than not, such infighting isn’t even in the presence of a fuck up on rule 2 but simply philosophical disagreements. Quite frankly, philosophical disagreements are a shit poor reason to engage in energy sapping infighting. If your philosophy does not connect with someone’s methods, well that’s something to discuss on down time, civilly and without argument. Jabbing at people because you think their Nuking is violent and wrong or because you think their Appeasement is an utter useless waste is not acceptable. The infighting divides us and it’s part of why we’re staying conquered.

4: Tag Team: Using multiple methods of communication in your AMO or having different AMO Communicators to back you up when you’re in the field or on the front lines maximizes your potential. If you do a little bit of Nuking and the person is getting pissy and whiny or seems to be withdrawing, call in an Appeaser to put it in gentle terms. If you’re getting ignored completely as an Appeaser, call in an air strike from the Nukers to get the attention centered on your movement’s needs. Logic Bombers and Emoters working together are especially invincible, because what works better than rational arguments mixed with things that tug your heartstrings? Remember, the stakes are intensely high. It is worth it to manipulate the majority, because chances are that’s the only way we’re going to get what we need.

5: Always Have Substance: This I can’t stress enough. It doesn’t matter how much attention you get as a Nuker, or how well you can string together an argument and logic as a Logic Bomber if you aren’t right and you don’t have content within your method. It’s irrelevant how gentle and caring you are as an Appeaser or how well you can play the heartstring violin as an Emoter if you’re wrong or don’t have anything useful to say on your group’s needs. Always make sure you know what you’re talking about, don’t speak for those with different experiences and make sure you actually have something to say. Communication methods won’t save you if you don’t have anything to communicate or you’re dead wrong about something.

It's a very good read. So go ahead and give it a look!

A Critique of Ginger Taylor

Lately, my attention has been brought to the writings of a Mrs. Ginger Taylor, who describes herself as the following on her AoA article:

Ginger Taylor holds a master's degree in Clinical Counseling from Johns Hopkins University that Dr. Gorski thinks she should not mention so much. She is an autism mom with a really messy house because she believed that those pretending to serve man kind actually were and spent way too much time trying to get them to look at evidence that a generation of children are being severely injured by over vaccination and pollution. She blogs at Adventures in Autism, where she will be absent for a bit in order to clean up her life after all the time and energy she has wasted on posers who don't give a shit about sick children. Her current projects include praying to God to take away her bitterness and anger, and playing Farm Town with her sons where her blueberries are at 23%.

Her article on the AoA site is what can be summed up as a general complaint at the lack of concern and appropriate response to a letter she wrote to several professionals. She has posted the exchange on her blog HERE. She has mentioned responses to this exchange by people who weren't originally addressed in the original letter. Well, to that, I'll have to remind her that when something is posted onto the internet, it becomes part of the public domain, of a sorts. Yes, one can claim copyright laws, but once published publicly, everyone can see it and everyone is allowed to comment.

And so, this individual, who happens to be autistic, will comment and examine Mrs. Taylor's words.

Okay, first we have the usual story: child gets vaccines as per doctor's orders, child is diagnosed with autism, mother believes the vaccines caused her child's autism and feels betrayed by science-based medicine.

May I point out that Mrs. Taylor has a Master's in Clinical Psychology? This means that not only has she gone through the undergraduate program, but she has also gone through the graduate program. The next level in post-secondary education is doctorate, however, that is for people aiming for certain jobs, research and interests. An undergraduate degree develops critical thinking skills, the ability to take information and apply it to different situations and be able to argue one's stance. A Master's degree means that a person has written a thesis and successfully presented a valid argument. Someone working towards their doctorate degree would then present work that is potentially publishable in peer-reviewed journals, and then begin on, well, doctorate work. The particulars of this system may differ in the various departments, however, in every department, an undergraduate degree depends on the ability to do appropriate research, make the right documentation and present critical thinking skills. Also, I might add, that university libraries are not reserved for just current students, but are open to every person in every field to do research and expand on information. This means that should Mrs. Taylor wishes, she can go to her public university library, do research and have the skills to properly cite and document the information.

Let's look at the sources of information that Mrs. Taylor has read about autism:

Vaccine package inserts, a few studies, AAP/CDC web sites, a few media accounts

Hmmm, I can't help that she doesn't mention which studies and which media accounts she has been reading. Given that she refers to the question of whether "autism, an autoimmune disorder where in the immune system attacks the central nervous system" being caused by the Hepatitis B vaccine, I can't help but suspect that she did not read any official documentation about autism, or even looked it up in the DSM-IV-TR. If she had done so, as someone with a Master's in Clinical Psychology would be able to do since even an undergraduate in Psychology would be able to do so, then she would know that autism is NOT an autoimmune disorder, but is considered to be a Pervasive Developmental Disorder that is neurological.

She then refers to her pediatrician not looking over highlighted vaccine inserts and the lack of response from the American Academy of Pediatrics, apparently using her experiences as evidence that the entire field of health professionals are inconsiderate of parent's concerns regarding vaccines.

Mrs. Taylor then cites David Kirby's Evidence of Harm. I point out here that Mr. Kirby is a journalist; it's his job to sensationalize every little thing that may turn out to be a selling story. So, at best the information that he provides is ignorant and at worse is downright lying.

From what I can tell from the research that Mrs. Taylor has been doing, the data in which she is using is also quite dated. Meaning, that the way the industry ran many many years ago is not necessarily the way in which it runs today. For example, safety protocols are always being re-applied, processes are updated and knowledge is constantly being discovered. I can't help but notice that many studies that are being quoted are quite dated and therefore are incorrect in today's context. Not that she mentions very many studies or where she is getting most of her information, as an academic should.

However, the rest of her post is largely her grievances over individual science journalists and bloggers whom disagree with Mrs. Taylor on 1) the definition of autism 2) the probable cause of autism and 3) the treatments and supports that autistic people need. Apparently, some of these people have viewed her as yet another of the crowd that believes mercury/vaccines cause autism and have treated her un-courteously and condescending, causing her to be very angry and frustrated. She excuses her public display of behavior with

And that anger apparently began to push me over some line somewhere, because today, three weeks later, I just don't care about giving myopic, immature, biased and unprincipled "science writers" the benefit of the doubt or a hundred more chances any more.

As she reports, Mrs. Taylor "asked them to do some self-evaluation. Demanded really" and the response was the following:

The response from "them" to my challenge that their dismissals, their insults, their lack of insight into themselves, their inability to self-correct and refusal to examine and address "our" concerns might be the problem, was to dismiss me, insult me, demonstrate an extreme lack of insight into themselves, display an inability to self-correct and to refuse to examine and address my concerns.

They responded to my accusations of failing to live up to the standards of their chosen industries, by failing to live up the standards of their chosen industries.

I called them biased, and to prove me wrong, they showed me their bias.

Giving Mrs. Taylor the benefit of the doubt, I followed her link to the letter she posted and sent to Lori Kozlowski. At the beginning, it seemed like a very reasonable response to Mrs. Lori Kozlowski's article. However, the letter slowly becomes what can only be described as an attack at the science-based medical community at a whole, based on the actions of a few skeptics and critics of the vaccines-causing-autism manufactured "controversy". Mrs. Taylor, in presenting her arguments, fails to present proper documentation for her sources and barely acknowledge or even consider the scientific data that has been gathered since the first time that these concerns were addressed to scientists in 1998, over ten years ago. When she does acknowledge the studies that have been done for her and others benefit, she does so to remark on supposed behavior of the scientists involved and does not even address the findings, never mind treat the subjects in a professional manner befitting of her academic status.

Instead, in her letter to a few of the journalists and skeptics, she makes a comparison of science with religion, calling on scientists to have a religious experience in their fields, forgetting that the nature of science is not to be about the individual, but rather about the entire population as a whole, and that scientists may not even be religious. Actually, it's very likely that the majority of scientists are not religious and such a demand for soul searching and conversion to faith-based studies is quite inappropriate for the field.

I am not going to address the issues concerning the studies, because I am not a scientist. Nor am I a journalist, or a science journalist/blogger, whose job is to write about the latest science news in an attempt to relate said news to the general public. However, as an individual, I can see the harm and immense cost (that would have to cover entire continents to be done properly as has been stated) in attempting to do some of the studies demanded, not to mention irresponsible to put so many people at risk of disabling and even fatal diseases. However, if they want to argue the specifics of such a study, they should address this and work with scientists to achieve a reasonable compromise, since previous scientific studies in the past have not satisfied people such as Mrs. Taylor.

Now, looking at Mrs. Taylor's conduct, in the entire letter, I did not see evidence of an objective academic who was using her critical thinking skills and acting in a professional manner in addressing other academics. I did not see the level of maturity expected for her age, the professionalism expected for her profession, nor the proper documentation for citing and the thorough research that is necessary for a Bachelor's degree, never mind for a Master's degree.

Returning to the entry with Mrs. Taylor's documentation of the exchange, she continues to respond subjectively to the responses that she received to her very subjective letter, and thus "proves" to herself and the rest of her reading public how dismissive the scientific journalism community and the science-based medical community is towards concerned parents. However, I may point out that no where has Mrs. Taylor demonstrated that these few individuals that she addressed actually represents the entire fields she attacks, nor has she demonstrated the objective skills and professionalism that these few apparently "lack" in their responses to, not professional or academic literature, but a personal letter.

Neither does Mrs. Taylor frame her concerns in the contexts to actual data gathered within the last ten years of studies that does address her concerns, rather dismissing the data as being made up information based on the fact that pharmaceutical companies fund the research, and with no regard to the actual scientific processes that renders funding sources as being irrelevant. Instead, Mrs. Taylor fires off her questions towards journalists and science bloggers without citations and references other than to her own blog and once to a newspaper article, and does not even a proper give a frame of reference.

To her credit, one of the responses that Mrs. Taylor was blunt and perhaps a tad unprofessional (to which Mrs. Taylor response with a barrage of questions, forgetting that such studies are easily accessible through university libraries and that in all science-based studies, there have been no indication of autistics having any unusual levels of health difficulties, including autoimmune, seizures and gastrointestinal issues, than the general public), in; however, the rest of the responses she received that she displays shows journalists responding appropriately to questions about their articles, their writing practices concerning science news, and a plain all-out attack on themselves as professionals. At one point, Mrs. Taylor urges Lori Kozlowski to quit journalism, as well as Ginny Hughes when she politely and nicely asks whether any of Mrs. Taylor's readers would be interested in a poll that might actually be in their favor.

In general with her letters and responses, Mrs. Taylor declares that not only is the LA Times "dying", but "...morality, honor and wisdom in scientific journalism is dying" due to the actions of the journalists to favor science-based medicine. She finishes her entry with one last jab at the original target, Chris Mooney, who was the author interviewed in Lori Kozlowski's article profiling his book, claiming that he and other scientists were trying to sell their "view of science" and that she "was their audience".

Not exactly Master's degree material, Mrs. Taylor, and not very professional of you, should you be wanting to present yourself as better than your opponents.
.

Paraphrasing Pseudoscience

I really shouldn't be posting this, since I have yet to actually watch the show. I'm investigating how I can watch it while not in possession of TV entertainment services. However, who am I to pass up such a lovely review of the show. This particular quote, to be particular:

Mr. Lauer: “What do you say to those who accuse you being a fraud?”

Dr. Wakefield: “I’m not a fraud.”

Mr. Lauer: “Well, OK then.”

The rest of the most excellent article can be found here on rangelmd.

Girls and Asperger's Book

Originally posted on LJ May 12, 2009

Girls and Asperger's Book
I'm reviewing it, and it's making me cry because it's what the psychiatrist told me 6 years ago.

http://books.google.com/books?id=KbxPsJQIDN0C&dq=tony+attwood+book+on+girls+with+asperger&printsec=frontcover&source=bn&hl=en&ei=iOEJStWvKYXAswOO5dnkCA&sa=X&oi=book_result&ct=result&resnum=7#PPA5,M1

I'm so picking this book up.

aspie social anxiety article review

Originally posted on LJ May 12, 2009 as commenting on aspie social anxiety article

commenting on aspie social anxiety article
So I came across this article on Twitter: http://www.aspergers.com/Adolesc.htm


Just wanted to make some comments on it.

(for the record, I'm using a gender-free pronoun "xe" and variants of, instead of genderizing, like the article is)

It starts out explaining that adolescence is a hard time for an NT kid, and is of course, a hard time for an autistic kid as well. As if we don't have identity trouble before adolescence, the teen years certainly spark up more angst and drama about it.

Good quote: "Adolescents yearn to develop a unique and independent identity, separate from their parents’. Yes, they love their parents, but they don’t simply want to follow their foot steps."

That is pretty much true, I think. A teen will rebel and push in order to discover what xe can get away with and learn about how things work in order to learn about xir self. In our society now, I don't think there is as much support for a teen's self-discovery quest, in that things aren't as clear and stable as a long time ago. We live in a very changing environment, and as adolescence, we become hyper-aware of how this affects ourselves. In this setting, we yearn to become self-reliant people.

Anyways, I have rants about that. Moving on.

I love it how the writer of this article needs to break down social anxiety/avoidance and social interaction/competency into measurable parts. Like the divisions of autism into "low functioning" and "high functioning", I guess it helps parents to understand the kid. But honestly, even the best of us can be pretty annoyed at social interaction or have a really bad day that just shuts down the social skills.

Here's a hint: My social interaction is directly related to how interested I am in the social sphere. In the past six years, I've developed a pretty decent-sized social community and have been social active, to the point of becoming an exec member for a campus club. And I've enjoyed every minute of it.
However, I think this is due to the fact that I've actively sought out a social group of people with the same interests and disregard to norms that I have. I found a place where it's okay to be weird and odd and occasionally be socially awkward. Everyone has heard of the socially awkward nerds, right? In university, it's less of an inability to be socially correct, and more of one's personal identity to not give up what one loves, and generally a contempt for social pressure to be "normal".

I predict, when I move away from Laurier and go back home, where I don't have that strong geek community, that I will relapse into becoming more socially awkward, socially nervous and will spend more time on the internet. For my internet friend, this is a plus. However, a lot of doctors might see this as me "regressing back into autism". That isn't true. It's simply that I see no need or anything of interest to maintain social competency. When I do find something, that will change. My skills tend to be flexible that way.

But what gets me about this article is that, from what I'm reading, the rate of social anxiety/avoidance seems to relational to the "functioning" level of am autistic.
to quote: "As autism gets less severe, the level of interest in peers usually increases."
Which simply isn't true from my experiences.
I have great social anxiety that keeps me from initiating many social interactions, most noticeably when trying to find a job, or contacting a doctor, or setting up an appointment. Or approaching a new group of potential social peers (that's going to be a fun one when I get back to Kingston). And I'm considered moderately-to-high functioning.

What I'm getting at is social anxiety isn't limited to any level of "functioning". The same is true for the level of interest. My mother will attest, that I will tune out any and everything that I am uninterested in, to the point of withdrawing completely into my own mind (I refuse to say my own world, as world is another word for planet). In fact, up to university, I more or less spent half of my waking hours in my own head, more or less ignoring what was going on around me. Yet I was functioning enough not to be diagnosed until I was almost 18.
Considering the many autistics not diagnosed until much older than I was, I doubt that I'm the exception.

Moving on, the part where the writer says: "Regardless of the individual developmental route, most children with autism start realizing that they are not quite like others at some point during their adolescence."

I'd argue that this realization actually occurs earlier, but a kid won't noticeably act upon it until adolescence. From a very early age, I realized that I was "different" from the other kids. Words had different meanings, different usage. Actions were different, etc. A thousand little unsaid things that pointed to one fact: I was different.
I only had these feelings of difference when I was at school; otherwise I was with my family, and things were normal. To my eyes, we were normal. It was only by interacting outside of the family that this changed.
It's amazing how much internal drama a kid can have about this, but it was only in adolescence that it began to matter. As a part of identity, to be different is a big thing and leads to a lot of angst. What's fun is when one realizes that autism is a developmental disorder; meaning that most of us, at any given time, are mental and/or emotionally operating at a developmental level that is about two thirds of our physical age. At average.

So as I'm writing this, I am 23 years old, physically, and operating, at average, at a mental/emotional age of approximately 15-16 years old. I say at average because the more tired/stressed and worn out I get, the more that number tends to drop. I've worked at my job as a cashier with a mental age of about 7-10 years old.
In 2002, I wrote THIS ARTICLE when I was 17, and operating at a level of about 11 years old mentally/emotionally. This was when I wasn't diagnosed with AS yet, just ADHD.
No, we realize we are different earlier. And it doesn't take a genius to figure that out. It just becomes more important and we act upon it when we enter physical adolescence. The nice part is that for females, we tend to stabilize around 16 years of age, physical and mentally. So in the next year or so, I'll be mentally stabilizing. Don't ask me about boys. I don't know.

next quote: "Once the adolescent realizes that he has significant difficulties in conducting social relationships compared to his peers, he needs deal with this loss, just like dealing with another loss."

Okay, yeah. There can be quite a bit of angst with realizing that one has difficulties socially. But to the point of mourning? Sheesh, it's not that bad. Personally, I fit this revelation to be relieving and freeing. Instead of struggling to reach an unrealistic goal of normalcy, I can make more realistic goals to consciously understand human behaviour and society, and develop the skills that allow me to interact socially. I'm not perfect at it, but then I can argue from my personal experience that neither are NTs!! Even social butterflies face challenges in society. Just because they have a different set of challenges doesn't deny the fact that they are challenges.

Seriously, don't mourn for us, and don't let us mourn for us. I don't want your pity. I want your support.

oh, I love this bit of advice: "Don’t try to minimize his difficulties, but also don’t let him exaggerate, providing gentle reality testing"
uh-huh. And how would a parent really know? If we are exaggerating, it's because the feeling is at least that big. So don't dismiss that even though an autistic teen isn't as socially incompetent as xe feels, that the FEELING isn't as real. Feelings are real, no matter what, and you need to take that into account.
Better advice: Validate xe's feelings and difficulties and ask questions that will allow xir to realize xier own strengths and true difficulties.

and then: "Offer the option of counseling, since sometimes it is easier to talk to a stranger"
Sometimes. But let's look at it this way. If an autistic teen trusts YOU enough to open up about this stuff, you don't offer to let xe talk to a stranger. Xe wants YOUR help. You think xe is going to talk to a stranger?

This isn't to say that I haven't talked to counselors. Some of them have been helpful in some areas. But every time, after the immediate reason why I started seeing them was addressed, I saw it as pointless and resisted attempts to continue. Nevermind that meeting a new one meant having to decide whether or not to trust them. Just because a person is a counselor doesn't mean they're automatically trustworthy. And a teen is more likely NOT to trust an adult.
So. An autistic teen trusts you to help xe with xeir problems. What do you do? A lot of factors there.

oooh, this is a good one: "Sometimes you have to be very political trying to sell an idea to a teenager. The mere fact that the idea is coming from his parents may make him refuse it. Let the idea come from a family friend, teacher, or a neighbor he trusts. Give him time to think about it. He may come back to the suggestion when he feels he is ready"

and, for the LOVE OF GOD, DO NOT LECTURE!!!!!
No teen likes to be lectured at. period. that's just setting up for an automatic rebellion, just from the PRINCIPLE of it. Instead, engage in conversation that allows the teen to think and come to xeir own conclusions. It's tough and requires a saints load of patience, but it tells the teen that you value xe making xeir own decisions and respect xem. The teen may not show it, but will be a lot more appreciative.

This doesn't just apply to autistic teens; I had this issue happen at the youth group at my church, where the youth pastor started to lecture us. It made us all really upset and the pastor was in danger of losing our respect for him. Our respect for him also made it hard for us to approach him, so I asked about the general feelings of the youth group and addressed the matter directly to him. In the end, a major youth rebellion was avoid and mutual respect for both sides was maintained, as well as our friendships.
Six years later, I'm still in contact with him and we're planning a youth group reunion.

Handle this right, and not only do you get respect, you get friendship.

Okay, the part about Clinical Depression. I forget where Christschool on youtube got the stats, but the leading cause of death among autistic adults is suicide. Like everyone else, we get depressed, we get anxious, and like everyone else, adolescence plays merry on our emotions.
side note, I believe studies have shown that clinical, all teens are insane due to the instability with chemicals in the brain. Everyone is equal in this.
So please please please, YES, get help if there is suspected Depression. Handle it well though, so you don't get the refusal to treatment that's in the case study the writer brings up.

Funny thing about that case study, actually. About 2002ish, I went to a psychologist to help with a major panic disorder, which I've described in previous posts. This is the same psychologist who diagnosed me with ADHD and Learning Disabilities in grade 9, and I fairly liked her. So I went back to her after a fairly traumatic panic attack in my evening shower that lead to me rushing out of the shower and immediately taking over a computer to type up what happened and a plea for help. It was so bad I couldn't say it; I had to type it. (I think my mom still has what I typed; she keeps those things as documentation)
But I went back to her, and worked on things as they came, until an exploding incident at Christmas of what we now know was me withdrawing and recharging being intruded on, that escalated into a situation where my psychologist, upon hearing about it, was ready to call Children's Aid had I been younger.

As the situation settled, the psychologist concluded that I was experiencing "rapid mood swings that can occur in females with ADHD" and referred me to a child psychiatrist at the hospital outpatient for medication. I was put on a light dosage of Zoloft, and continued seeing the psychiatrist for follow up. To be honest, I liked her. She was kind. She asked the RIGHT questions. Unbeknown to me, she was also talking to my mother, who provided her with the documentation of my past behaviour. The result, a working diagnosis of Asperger's which was confirmed by other specialists at the hospital. One of the best things to have happened in my life.

Funny how these things happen. Anyways.

Good points on encouraging specializations in interests. About the contacting the Autism Society of America, though. I'd rather you contact WrongPlanet.net. There's over 14,000 autistic members on the forum and growing and has all sorts of handy resources. I could be paranoid, but I don't trust Autism Societies, as a lot of them have curebie mentalities, and I believe that is more harmful to autistic people that is constructive.

Last point of the article: yeah, just cause we're autistic doesn't mean we don't have the very human desire to reproduce. Actually, there's very few cases in which I would not argue that an individual feels the need to reproduce. Although, sex ed is a fun topic for any parent. My parents got around it by giving me a book called "what's happening to my body" and letting my private Christian elementary school handle it.

seriously. sex ed for autistics doesn't have to be complicated.



aaaaand, that wraps up the article. huh, I spent two days writing this. Back to writing my assignment and finding MLA handbooks, and hey, I need to do laundry and get my brows done... **wanders off**

in which logic is flawed

originally posted on LJ April 23, 2009. Please note, I am not a scientist, so this is all my disdain for badly reasoned opinions being presented as fact.

so, Jim Carey writes a little about the judgment on vaccines NOT causing autism.

http://www.huffingtonpost.com/jim-carrey/the-judgment-on-vaccines_b_189777.html

some of my favorite quotes

"This is a huge leap of logic by anyone's standards. Not everyone gets cancer from smoking, but cigarettes do cause cancer."

Yeah, cancer from cigarettes is caused by consistent exposure to the chemicals in cigarettes. Other than us asthmatics who cough like crazy and whatnot, minimum exposure to cigarettes won't cause cancer.

"The truth is that no one without a vested interest in the profitability of vaccines has studied all 36 of them in depth."

Sooooo, if everyone who studies the vaccines has a vested interest in their profit, then all the results are therefore bogus and no matter what they say, will be rejected by the antivaccine/green vaccine crowd. You gotta have at least some trust in people.
Also, I don't know, but aren't there studies done in other countries that aren't American? hmmmmm, rather dismissive of all doctors there, Jim.

"f we are to believe that the ruling of the 'vaccine court' in these cases mean that all vaccines are safe, then we must also consider the rulings of that same court in the Hannah Polling and Bailey Banks cases, which ruled vaccines were the cause of autism and therefore assume that all vaccines are unsafe. "

Wasn't that the case where it was discovered that Hannah had an underlining condition that reacted with the vaccines to develop 3 autistic-like behaviours? Big difference, there. Edit: and it wasn't the vaccine court that ruled that case.

"The legitimate concern they and many in the scientific community have that environmental toxins, including those found in vaccines, may be causing autism and other disorders (Aspergers, ADD, ADHD), cannot be dissuaded by a show of sympathy and a friendly invitation to look for the 'real' cause of autism anywhere but within the lucrative vaccine program."

The funny part is that some of the apparent toxins in the vaccines, like mercury, can be found in larger quantities in perfectly natural and healthy sources. Like fish.
Also, it has been proven that the major study which claims that vaccines cause those disorders had been falsified.
Also, Aperger's IS autism. AS is an Autism Spectrum Disorder under the Pervasive Developmental Disorders in the DSM-IV. Facts are fun to ignore, aren't they Jim?

"With many states like Minnesota now reporting the number at 1 in 80 children affected with autism, can we afford to trust those who serve two masters or their logic that tells us "one size fits all" when it comes to vaccines?"

Apparently, no one. So until someone in "them" says that yes, all of you vaccine nuts are right, you won't believe anything we say. But that won't happen, because it would be lying, and that's wrong.

"Can we afford to ignore vaccines as a possible cause of these rising numbers when they are one of the fastest growing elements in our children's environment?"

And more diagnostic tools mean nothing, huh? Education means nothing too, huh? Apparently so, since Jim, an actor of comedy, is now a self-proclaimed expert on autism causes without opening a textbook when scientists and doctors have been working on this for a good long while.

"With all the doubt that's left hanging on this topic, how can anyone in the media or medical profession, boldly demand that all parents march out and give their kids 36 of these shots, six at a time in dosage levels equal to that given a 200 pound man?"

There's more dangerous toxins and chemicals in CHELATION than there is in the vaccines. They tried to do a study on Chelation; they stopped it before it started because it was too dangerous for the adult human subjects. And DAN! says it's a way to cure autism. In children. (sure, if they don't DIE first!)


"This is a bias of the most dangerous kind."

You know, bias is a two way street, Jim.

"I've also heard it said that no evidence of a link between vaccines and autism has ever been found. That statement is only true for the CDC, the AAP and the vaccine makers who've been ignoring mountains of scientific information and testimony."

From whom, your wife sorry, your girlfriend? Sooooo, what about the non-American governments, who also still use the MMR vaccines and the same vaccine schedule? Also, they've been developing these vaccines for years now. While there was a cause of concern some couple decades ago about the amount of Mercury in the vaccines, they've improved on the vaccines, and those vaccines don't exist anymore. They would have been either discarded or used by now. Sorry, but vaccines don't have a century-long shelf life.

"We have never argued that people shouldn't be immunized for the most serious threats including measles and polio, but surely there's a limit as to how many viruses and toxins can be introduced into the body of a small child"

I repeat my comment about Chelation. Strangely enough, apparently the cause for toxins in vaccines causing autism is a digestive problems like Leaky Gut that allows the toxins to reach the brain. Otherwise, those toxins would leave the body within a 24 hour period, or abouts.
So what about the people with autism who got the vaccines, and don't have digestive problems?


The rest of what Jim says seems to be based on old facts. Which, of course, are old and therefore only apply to the time period in which they were new.

So really, the main problem is the schedule.
Edit: Also, the UK has a lower amount of vaccines in their schedule and a higher rate of autism than in either Canada or the US, so the argument that reducing the vaccines is stupidly flawed.

You know, when I was a baby, I had most of the blood in my body taken out for blood testing. My mother couldn't believe how much blood they were taking, and was sure that I couldn't survive that much blood loss. And yet, here I am.

Humans are amazing things, really. Yes, when we're babies and children, we're still developing and don't have all our defenses up and are vulnerable. When we're fully grown, we're pretty pathetic compared to all the other critters in the world. And yet, we're tough and we survive.

So, I think I'm going to trust in humanity, and give my child the damn shots.