No Stereotypes Here

Archive for the ‘review’ Category

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decent paying job that does not cost a huge amount of emotional stress and is able to gradually have social assistance withdrawn, the person is in quite a bit of debt due to the cycle created by earning deductions in social assistance.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.

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.

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. 

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!

.

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)

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.

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!



  • None
  • Corina Becker: Hi Anonymous person who apparently doesn't feel like giving me a name to address, and thus hides behind anonymity!!! I never said the federal gov
  • Anonymous: I think that it is about time something is being done federally to help those with ASD to get much needed therapies for their disability and YES I do
  • Corina Becker: Hi Janine! Melody reads here? Awesome. I honestly had no idea she was aware of this blog.And thank you so much, I'm glad both of you like the bl

Categories