A Block to Autistic Self-Advocacy

If you haven't already heard, a delay has happened in the confirmation of autistic self-advocate Ari Ne'eman's nomination to the National Council on Disability, the youngest nominee in US history. As Ari has demonstrated, age is not a barrier to experience.

Ari is most known for founding the Autistic Self Advocacy Network, a non-profit organization run by and for autistic people to provide support and services to autistic individuals while working to change public views of autism through community education. Embracing the principles of the cross-disability community, ASAN promotes inclusive education, community living, and the inclusion of autistic individuals in the national conversations and decision making that concerns autistic people. Currently, ASAN has chapters in several states in the US, as well as in Australia and Canada, and is engaged in initiatives on both state and federal levels.

While Ari certainly does not work alone as founding President of ASAN, he also has his own personal contributions and outstanding achievements. He has served on the New Jersey Special Education Review Commission, was appointed by Governor Jon Corzine to serve as Vice Chair of the New Jersey Adults with Autism Task Force, was the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability, is a board member of TASH and the Autism National Committee, and has served as the first Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. During his time serving on the New Jersey Special Education Review Commission, he wrote a minority report on aversives, restraint and seclusion.

He has been recognized for his work, having received the HSC Foundation "Advocates in Disability" Award and the United Cerebral Palsy's "Expanding Horizons" Award.

Recently, Ari has been involved in the passing of the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) and on the investigation of the abusive practices of the Judge Rotenberg Center. He has expressed personal interest in the case of Zakh Price, and has been involved with the protests and cross-disability outcry of Autism Speaks derogatory portrayal of autistic people.

On top of it all, Ari is a senior student of Political Science at the University of Maryland, Baltimore County, where he is finishing up his studies for May 2010.

In comparison to the other nominees that were confirmed, Ari's involvement in the autistic and cross-disability fields, plus his own experiences in a secluded special needs education program and post-secondary education makes him an excellent addition to the National Council on Disability. His own achievements and mission statements are very similar to the goals of the NCD, "to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."(NCD)

I am sure that I am not alone in the autistic and cross-disability community when I say that I am confident that the US Senate will not hesitate to maintain the purpose of the National Council on Disability, will not create barriers for all persons to have an active role in society and the government, and will participate in empowering autistic and disabled persons in being included in national discourse.


.

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)

The Triggering of Dr. Wakefield

There has been a lot of going ons about the hearing of Dr. Andrew Wakefield and his general misconduct in his 1998 Lancet paper. You remember, the one that claimed to have found a connection between the MMR vaccine and Autism.

Now, a decade later, his findings are thoroughly discredited, and he's been taken to task, not for his findings, but the way in which he conducted his research. It is very well likely that Wakefield will lose the official justification to put "Dr." in front of his name over this. Not that this will stop his more .... loyal followers from doing so. But in the eyes of the academic and medical community, no. He is practically stripped from the title, the respect and authority as a medical professional in the unethical and callous methods of his research.

I'm not going to cover all the findings and the commentary about this. Although, Lizditz has done an excellent job, as usual, compiling a list of the commentary, news coverage and general blog-interaction, including the Lancet officially and completely retracting Wakefield's infamous study.

And no, I'm not going to rehash what pretty much everyone who reads here already knows, that I thoroughly disagree with Wakefield. Period.

No, what I'm wondering about is the fact that Wakefield was approached, seemingly, by the lawyer of families convinced that the vaccine had caused their children's autism, and looking for medical justification to take the vaccine companies to court.

Let's just pause and think. Sure, Wakefield has a history of research targeting to slander the MMR, in the interests of promoting his own vaccine. Sure, he accepted the payment from the lawyer and conducted the research horribly. And yes, the fallout from his actions
1) decreased the vaccination rates, allowing measles, mumps and rubella to return, to sicken, to disable and even outright kill
2) poisoned a portion of the population to believe in scam treatments, costing families vast amounts of money and blindly following every charlatan in a desperate false hope to "fix" their "damaged" children , and
3) set back proper scientific research into proper accommodations and supports for autistic people

But, would Wakefield had been looking to connect the MMR to Autism if it wasn't for those families?

I know, I know, it'll be MEAN of me to blame the families for all of this. After all, they were (possibly still are) in the desperation that many families with autistic members experience today.

And in their desperation, I can imagine that they saw that what countless others have noticed, that the autism becomes apparent around the same time that the vaccine is administered. It's the whole seeing causation in correlation thing, making connections that may not (and most likely don't) exist. It's what humans do, try to make sense of the world. I don't want to count or even consider the many superstitions that humans have in place by following this try of reasoning.

However, for some reason, these families took their hunches, and decided to look for proof and decided to look for compensation. And that decision took their lawyers to Wakefield.

It could be a simple reason that there was, at that time, no information concerning a connection between vaccines and Autism. Or maybe that the information was not easily accessible, or in terms that was understandable. I remember 1998 and computers and the Internet weren't exactly the commodity it is today (well, at least it wasn't for our family).

But either case, these families felt that there was a case to be made in this, and looked for proof.

Now, I don't know who's idea it was to approach Wakefield, pay him to conduct a study with some brutal and unnecessary tests on their children, and basically manufacture favourable results. I don't know whether it was the lawyer, or one or many of the parents.

But SHAME on them.

It is that person that I personally consider to be the most responsible for the fallout that has happened from Wakefield's now-fully-retracted study. Yes, that means I consider them partially responsible for the Jenny McCarthy Body Count, for the unsafe, scientifically unproven quack treatments that cause undue suffering of autistic individuals, and for all manner of emotional and mental stresses that this causes autistic families, including those that can drive parents to murder their autistic children because of a lack of support.


With the misery that has been caused as a result of that person, the decision of the parents and lawyers, and the actions of Wakefield, who really has benefited? What good has come from all of these? Other than the resounding evidence proving Wakefield wrong, I don't think that the autistic community has gained very much. In fact, I don't think that the human population has gained at all, given the increase in completely preventable diseases.

Has those families who originally approached Wakefield really benefited from this, and has any of them even considered themselves to be partially responsible for the fallout?

In closing, while I do think that it's proper that Wakefield to bear responsibility for the part that he played, I think that he is not the only one to bear full responsibility for the crime that has been committed against the autistic community. I'm in no position to actually say who all needs to bear responsibility for this, but I think that it is something to be considered.

After all, one can only be responsible for one's own actions.


[edit: Feb 2011] There's been more breaking news about Wakefield, that he actually changed data in his study, and it's adding more flames to the fire. I have heard rumours that Wakefield approached the lawyers, not them approaching him. However, I have yet to confirm those reports, but I still have to maintain that there is a responsibility from the families for their part in Wakefield's actions, in their funding, in their interest in him producing his results, and the fallout that occurred.

Autism Women's Network

As Director of Networking (a fancy way of saying Forum Moderator), I present to you the Autism Women's Network, which has officially opened it’s website and Forum, as well as a twitter feed, Facebook group and BlogtalkRadio show (all available on the website).

Lately, we welcomed Professor Simon Baron-Cohen, Liane Holliday Willey, and Ari Ne'eman to the Advisory board, and completed shows with Temple Grandin.

The mission of the Autism Women's Network is to provide effective supports to autistic females of all ages through a sense of community, advocacy and resources.

And some words in the "About" section, from the Executive Director, Sharon daVanport:

Greetings and welcome to the Autism Women’s Network. AWN is dedicated to building a community of autistic females, their families, friends, and supporters who have a place where they can share their experiences amongst a diverse, inclusive, and supportive environment. Our website will always be viewable by non members; however, we ask that you take a moment to complete a simple registration in order to have full access to the site which includes: actively participating in the forum, and posting comments on articles. We invite you to take a look around and join us today.

Now, we're newly started, so not everything is completely sorted out. However, we welcome all people, autistic, non-autistic, male, female and the genderdiverse, to AWN, to support one another and provide a community dedicated to autistic women issues, as well as to just have fun.

I hope that the AWN will be a friendly place for everyone here.



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

Advocating

I'm looking into some information for my friend Robin on a situation that's happening with her little sister.

Her little sister is 6 years old and in grade 1, in a regular classroom in Catholic school. She was diagnosed as ("severe") Autism Disorder when she was a toddler, and in the past year, she was able to attend school regularly with an IEP and an EA (Educational Assistant, aka, a one-on-one aid). She got along well with that EA.

Sometime last year, the school was asking for more documentation of her diagnosis, even though the documentation that was provided the previous year was enough for her IEP. The school was needing the further documentation for her IEP, her EA and a special assistitive technology laptop.

The family got documentation from their family doctor and held meetings with the school, which resolved that particular issue.

However, this year, her sister no longer has the EA that she got along with so well, and has a new EA who doesn't seem to be actually helping the sister. She and the EA do not get along, and it has gotten to the point that she does not want to go to school.
The school, now, wants her to go to a different school, because they do not want to provide her with further help to find a different EA.

As it is, Robin's sister was working up to attending school full-time, but now her education plan as been completely disrupted. From what I can see, if the school gets its way, either Robin's sister remains with her dysfunctional EA and descends into meltdown and behavioural problems, or else is forced to start again in a different school, which, as you know, can be traumatic.


Now, the question is, is the school allowed to do this, and what can the family do?

Does anyone with knowledge of Canadian education laws know anything that we can do about this?

Please support Zakh

I want to stress this issue more. Zakh is an 11 year old autistic boy who is being charged with a felony for pushing and kicking two teachers who were attempting to restrain him as he was trying to calm down from a meltdown. The two teachers in question was, at the most, only bruised and did not need medical attention. Yet this boy is being threatened with being placed in a mental hospital that is not equipped to support autistic people, and even has caused Zakh to regress.

There is more information at http://zakhs.blogspot.com/

Please, spread the word about this to the media, and if you even have a few dollars to spare, please donate, as his grandmother is in need to funds for legal fees.

Bit delayed in posting this, but things have been a bit rough in the recovering from holidays period. Anyways, I received this email on FaceBook, and I decided that it's important to bring this issue to light.

I'm not going to say much, except that if you don't know about the case with Zakhqurey Price and what we're talking about here, please do a quick search to get caught up on the details.

From Ari Ne'eman of ASAN

Hello,

In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now. Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. Carole's grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
(202) 596-1056