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Archive for December 15th, 2010

First Published Saturday, 5th April, 2008.

WITHOUT JUST CAUSE


When Kathleen Seidel, owner of the Neurodiversity website and blog, was served with a subpoena a week ago, understandably, it didn’t take long for a mammoth rush of support to follow. Words of outrage over the injustice and intimidatory nature of the action, brought condemnation from members of the neurodiverse community far and wide, as well as Doctors and Lawyers themselves. I say understandably, since Kathleen has long set the standard in regard autistic advocacy, and has provided us with a stunning array of online resources and the latest on disability issues. Her character is second to none. She has always conducted herself in the most courteous manner and presents in a highly intelligent and logical manner.


So, how did it come to this? Throughout history, those whose knowledge and positive influence shine brightest, tend to inevitably ruffle a few feathers. Blogging in regard the activities of the Rev. Lisa Sykes and her husband Seth Sykes, who continue to claim, despite all the evidence to the contrary, that their son’s autism was caused by mercury poisoning via vaccines, has done just that, it would appear.


Reporting and sharing opinions on matters highly relevant to the community is no crime. Indeed, there is no indication that Kathleen is being accused of having done anything or written anything illegal. She has been asked to hand over all correspondence between herself and all “religious groups(Moslems or otherwise), or individuals with religious affiliations”, as well as most of those who are on her blogroll.


Notably, the subpoena is excessively intrusive in its terms. Plaintiffs and their counsel seek not only to rummage through records that they suspect pertain to themselves, but also through Kathleen’s family’s bank records, tax returns, autism-related medical and educational records, and every communication concerning all of the issues to which she has devoted her attention and energy in recent years. Mr. Shoemaker has actually engaged in a sanctionable abuse of his authority as an officer of the court through invoking the judicial subpoena power.


Kathleen’s outstanding reply to quash the subpoena, should settle the matter briskly one would hope. Persecution without just cause will inevitably reflect badly upon Sykes and Shoemaker. Let common sense prevail. Kathleen’s work speaks for itself – long may it continue.


With you, beside you, as always Kathleen.


Julie



First Published Saturday, 5th April, 2008.

Kathleen, you’ve had our unwavering support in the past.  You most certainly have it now.

As reported by a member of the community:

Kathleen Seidel, creator of neurodiversity.com, has been “SLAPPed” with a bogus subpoena by dirtbag anti-vax lawyer Clifford J. Shoemaker. The demands in the subpoena include all personal and financial documents pertaining in any way to her website, as well as all electronic correspondence and documentation pertaining to over a hundred other bloggers and websites — simply because their links appeared in the side-bar of her weblog. The demands in the subpoena include brazen violations of constitutional protections concerning privacy, freedom of association, and even freedom of religion.


Kathleen has drafted and submitted an outstanding motion to quash the subpoena, but the decision of the court may not be known for some time.


http://neurodiversity.com/weblog/article/150/

Meanwhile, countless bloggers in the autistic self-advocacy, neurodiversity, and disability rights communities — and even in legal and medical circles — are rallying around Kathleen and condemning Shoemaker and his clients for their blatant attempt to USE Kathleen in a bid to intimidate and silence their critics. Several bloggers are even compiling running lists of posts made by bloggers all over the web expressing their support for Kathleen, and their outrage at Shoemaker’s abuse of power.


Several dozen such posts are linked to from these:


I Speak of Dreams
The Voyage
Natural Variation
Holford Watch

Some of my own observations and opinions on this matter can be found at:
Shoemaker’s Witch-Hunt: An Open Letter

Please show your support and help protect our civil and human rights by blogging about this outrage. Thanks.”




swimming

STIMMING FOR ENGLAND!


First Published Friday, 4th April, 2008.


Tell me, do you ever find yourself sitting at your desk, maybe tapping your leg or foot away or twirling your hair in your finger? Tapping that pen on your desk right there? How about stuck in traffic, no end in sight? Are you by any chance tapping that finger on your steering wheel? Pushing the button on your window, up and down, up and down … ? Well, that’d be stimming behaviour right there.


So what is stimming and why do we do it? Stimming is repetitive movement of parts of one’s body that produce stress relief or pleasure. Stim behaviours are coping mechanisms. Both neurotypical and non-neurotypical people stim and it’s a very necessary tool in self-calming. It’s often misunderstood as meaning one thing at all times to all people labelled ‘autistic’ when in fact it has many uses and meanings and is something all people do, though many don’t realise it.


Some therapies seek to reduce or prevent stimming, particularly in regard those on the autism spectrum. If you attempt to suppress the stim behaviour, stress will inevitably build up, until it possibly reaches meltdown stage. Stimming should not be thought of as undesirable or abnormal. It is vital for stress release and part of the neurology of all autistic people, and neurotypicals. If you want to reduce the stimming, it’s best to find out what’s causing the stress and reduce that.


Liane Holliday Willey once wrote “Many aspies rely on stim behaviour to still their nerves. A stim may be defined as a self-stimulated repetitious behaviour intended to provide and regulate sensory information. A stim may include behaviours such as rocking, hand-flapping, pacing, hand rubbing, spinning, jumping, echoing noises from the environment. I encourage my daughter and myself to practice our favourite stims when we feel the need. I tend to rely on my own stim behaviours when I am alone or in my own home. For me, there is nothing more calming than a drift in our pool. Floating under water like a lazy dolphin is a perfect tension releaser for me. I cannot do that in public pools, and before we had a pool of our own I used to float under the water in my bathtub. Things on land work well, too. I have Aspie teen friends who enjoy walking in circles, walking in squares or simply moving about as if they are floating on a cloud. Movement, it seems, free or regimented, often works well to release tension.”


Over on Autism Today when a parent asked “As I’m new to autism terminology, could someone please tell me what stimming is?


Donna Williams replied:


“Stimming stands for ‘self stimulatory behaviours’. Something non-auties imagined they didn’t have.


Stimming is a word created by non-auties with often negative connotations. It was a word created by non-auties who didn’t understand that some folks had compulsory but involuntary tics, some had self calming tools they didn’t understand, some had sensory fascinations they couldn’t relate to, some need to tune out to tune in, some needed a tool for social distance in the face of compulsive social invaders, some needed to be repetitive in order to download, some needed to compensate for a non-autie multitrack world they couldn’t process in their mono-tracked reality, some needed something to get lost in when utterly blowing all fuses…. and, anyway, the non-auties labelled, as is their tendency, this vast array of experiences with one word as if it was one thing at all times to all people labelled ‘Autistic’.


Forgive them. They know not what they see..”


As for me, I’m more of a ‘pacer’, whether upset or happy. I pace, book or notes in hand study-wise and retain information best this way. I pace, tea or wine in hand while listening to music via ipod/headphones. I also do precisely what Liane does water-wise. Have always felt an affinity with water and was a water baby, swimming morning, noon and night throughout childhood and adulthood. So wonderful to have a pool all to yourself at the end of a hot Summer’s Day. For me, it’s about gliding through the water, repeatedly, totally immersed. The sensory aspect is amazing. Sacred time alone to destress or to simply get lost in your favourite stim is heaven!


1. Carol and Eli Surber left…

Monday, 4 May 2009 2:26 am

Stimming…the movements of calming. Eli flapped his hands, rocked and rubbed his face when young. As a teenager, he jerked his head, clapped his hands, and still rubbed his face. Now as an adult, he twists his fingers, hums, and still….rubs his face. His speech has been absent since age three, and he has NEVER cried, not even as an infant. Before the ativan, he stimmed constantly and wildy…now his movements are slow but always there. Carol



First Published Thursday, 3rd April, 2008.

*These comments were delivered today to the Florida Autism Task Force’s
inaugural meeting by ASAN President Ari Ne’eman.

*
Thank you for this opportunity to address the first meeting of the Florida
Autism Task Force on today, the first World Autism Day. My name is Ari
Ne’eman and I am here today in my capacity as the President of the Autistic
Self Advocacy Network (ASAN), a volunteer non-profit organization run by and
for adults and youth on the autism spectrum. ASAN works to promote the
autistic culture movement and other opportunities for individuals on the
autism spectrum to interact with each other as well as work to improve the
representation of the autistic community in public policy deliberations
about autism and disability affairs.

The autism spectrum is broad, diverse and subject to many stereotypes. Just
as we work to combat generalizations about racial, religious, national or
other minorities, it is only right to avoid a stereotyped view of autism.
There are speaking and nonspeaking people on the autism spectrum; people
currently capable of living independently and holding competitive employment
and those with more significant support needs before those goals are
conceivable to them. There are those of us who have held diagnoses since
childhood and those of us who were identified later in life, serving to
correct an inaccurate previous diagnosis that had placed us in the wrong
educational or service-delivery infrastructure. To claim, as some continue
to do, that we on the autism spectrum are all incapable of speaking for
ourselves is an ignorant and damaging falsehood. Equally harmful is the idea
that autistic people are all geniuses or savants, with Rain Man-esque
abilities. As someone with an autism spectrum diagnosis myself, I hope to
address some of these misconceptions, explain a bit more about our community
and inform those assembled here today about the public policy priorities –
and concerns – of the autistic self-advocacy movement. In doing so, I hope
to communicate to you that, contrary to the unfortunate paradigm that has
pervaded the media discourse about us, autism is not a tragedy. We are, as
with any other minority, a community with unique needs, strengths,
challenges and aspirations that are often distinct from the parent or
professional voices that speak about us, without us. The true tragedy is the
persistent discrimination, abuse and lack of access that continues to govern
society’s approach to us. On this, the first ever World Autism Day, we
assert that it is this prejudice – not autism itself – that we have a true
interest in combating, in the interest of ensuring for every person the
rights of communication, inclusion, self-determination and respect.

I was diagnosed on the autism spectrum, specifically Asperger’s Syndrome, at
age 12. Growing up, I spent time in both inclusive and segregated
educational placements. My own negative experiences with segregated
educational environments led me to become an advocate for my own educational
inclusion and later for the inclusion of other students with disabilities.
These experiences motivated me to found the Autistic Self Advocacy Network,
an international grassroots advocacy organization of adults and youth on the
autism spectrum. ASAN’s work has involved me in a number of areas of public
policymaking that are important to people on the autism spectrum, some of
which I will outline here.

In determining how best to develop a system that provides for the
educational, service-delivery and other needs for individuals on the autism
spectrum, it is imperative that self-advocates be recognized as the central
stakeholder in this discussion. I’m happy to see Florida creating an Autism
Task Force to identify what needs to be done in the areas of education,
services, supports and research, however I am saddened that the task force
did not provide for representation from people on the autism spectrum
ourselves. During my time in Florida, I will be working to create a chapter
of the Autistic Self Advocacy Network. I encourage the members of the Task
Force to communicate with us in their deliberations. Future policymaking
bodies relating to the autism spectrum and disability issues more generally
must include self-advocates. We know our own needs best and no policymaking
process can be legitimate without including those who it purports to serve.
Nothing About Us, Without Us!

One of the key areas of unmet need for the autistic community – the
community of those of us actually on the autism spectrum, as opposed to the
parents and professionals who make up the frequently discussed autism
community – is in the area of diagnosis. As many of you familiar with the
autism field are aware, we have been seeing a steady increase in the
reported incidence of the autism spectrum, with the most recent update
pointing to an incidence of 1 in 150 from a previous 1 in 166. The reason
for this increase in reported incidence is not an “autism epidemic” or any
other causation theory that seeks to promote the false idea of autism as a
contagion or a force that “steals” an otherwise normal child. This
disease-oriented model is not supported by either science or our own
experiences. What we are seeing is an increase in awareness of the autism
spectrum, resulting in more accurate diagnosis identifying individuals who
previously were placed within the mental retardation, mental illness,
learning disability or other educational and service-delivery
infrastructure. This is a situation that I myself experienced, having been
diagnosed on the autism spectrum after having an inaccurate ADD diagnosis
for years prior. It is also something that is experienced by many other
adults and youth on the autism spectrum in a far more damaging fashion, as a
result of the frequent institutionalization and presumption of cognitive
inability that far too many autistics continue to suffer from today.

The rapid increase in autism spectrum diagnoses has accompanied repeated
broadening of the diagnostic criteria for the autism spectrum, incorporating
more information about the diverse manifestations of our neurological type.
In addition, the past few decades have resulted in a decrease in the
stigmatization of parents of autistic children, as a result of the medical
community moving away from the odious and damaging inaccuracy that autism is
the result of “refrigerator mothers”. This, combined with increased services
and supports available for the autism spectrum, has resulted in more autism
spectrum diagnoses. These increasing numbers, however, fail to take into
account the substantial number of individuals on the autism spectrum who, as
a result of a lack of health care access and/or professionals trained in the
diagnosis of adults as well as problems with inaccurate diagnostic criteria,
are unable to find the resources to acquire the diagnosis that would
accurately describe their characteristics and enable them to qualify for
services. It is necessary that we increase the availability of accurate
information relating to the autism spectrum in reference to adults and
youth.

There remains a shocking lack of awareness for the needs – and even the very
existence – of autistic adults. In many circles, it is assumed that autism
is something relevant only to children and as a result legislation and
policymaking has been focused mostly on early childhood. However, there is a
large population of adults and adolescents on the spectrum with needs that
are not being met. In areas like employment accommodations and other aspects
of disability service-delivery, adults on the spectrum are frequently unable
to access the supports that are currently available, due to a lack of
knowledge of our particular needs. Many of us, as is the case for others
with less obvious, “invisible” disabilities, face pervasive employment
discrimination as a result of communication difficulties. Vocational
Rehabilitation agencies in many states are unaware of how to address these
issues, due to the fact that while many of us have the skills for
competitive employment, difficulties with transportation, the interview
process and the social aspects of the workplace can often interfere with
holding a job. It is important not only to educate the general public about
autism, but also disability service-delivery professionals who are too often
unfamiliar with our population.

Many adults on the autism spectrum continue to suffer in institutions,
despite the Supreme Court decision of Olmstead v. L.C., promising community
living options for adults with disabilities. In my work on New Jersey’s
Olmstead Implementation and Planning Advisory Council and with ASAN chapters
across the country, I have seen a consistent lack of knowledge of the unique
needs of adults on the spectrum when planning community living options. Many
of us have difficulties with certain kinds of sensory environments – a lack
of awareness of these issues on the part of those planning and implementing
the transition into the community can result in problems with the
de-institutionalization process. These and other aspects of community living
show the need for significant representation of self-advocates in the
policymaking process, to ensure both the legitimacy of the process and the
creation of the most effective possible public policy strategies.

Autism training for law enforcement (as well as other emergency personnel)
remains a key issue. Many of us possess significant difficulties with
communication, particularly in high-stress and anxiety-provoking situations.
What happens when a person who cannot speak out loud when under stress is
approached by a police officer and asked for personal information? What
about when a person fails to understand instructions given to stop or
engages in an activity that is interpreted as aggressive? There have been
numerous incidents of serious injury and even death as a result of a lack of
knowledge on the part of law enforcement personnel about autism and other
disabilities. This must be rectified and has been the source of legislation
in a variety of states across the country. High-quality training for law
enforcement and other emergency personnel does exist and it should be
utilized in every locale.

For many adolescents on the spectrum and our families preparing to
transition out of the school is a process with little guidance or support.
When I was preparing to leave high school, my school did not provide
sufficient information on the college applications process because it was
assumed that as a special education student, my options were limited. While
it is certainly the case that not every student on the spectrum – or every
student generally – will be able to attend university, more of us are having
that opportunity. It is necessary to see more of a focus on college
transition for students on the autism spectrum in both high schools and
universities. One of the areas that is frequently ignored in this process is
that of “soft skills” related to day to day living. Many of ASAN’s parent
members frequently are told that issues relating to life skills are not the
obligation of school districts, despite the fact that this type of education
is just as necessary for students to succeed as the more traditional forms
of academics. The communication and executive functioning difficulties that
those of us on the spectrum face compound the traditional difficulties that
new college students face. In fact, these issues – as well as the matter of
transition more generally – are relevant for all students on the spectrum,
whether or not college is a possibility. For a successful transition to a
post-secondary environment of any kind, basic life skills need to be
understood. It is essential that steps be taken to incorporate these
elements into the school curriculum in an inclusive fashion.

In a broader sense, educational needs for students on the spectrum must be
given additional focus. There has already been a productive discussion on
the issue of early childhood educational methodologies. It is important to
keep in mind that any educational intervention should be aimed at the
acquisition of skills, not trying to enforce an arbitrary standard of
normalcy. Efforts should not be aimed at the undesirable and impossible goal
of trying to make autistic individuals non-autistic. Instead, education
should be aimed at addressing the significant disabilities many of us face
with the goal of improving quality of life. We also have to ensure that are
educational methods avoid utilizing abusive and dangerous techniques in the
name of treatment. The use of aversive interventions, the application of
pain as a means of behavior modification, should be considered unacceptable
in any society that aspires to be termed civilized. As a result of aversives
and abusive restraint practices, many students and adults in institutions
are injured or even killed each year. This must stop. We need a full ban on
the use of aversives and non-emergency restraint as well as an end to
out-of-state placements that put students in facilities that utilize these
barbaric methods.

We also have to face up to the persistent problem of bullying and its
negative effect on the mental health of all students. Students on the autism
spectrum are particularly vulnerable to bullies due to the social literacy
issues we tend to have. When I was in school, bullying was one of the
reasons I spent a period of time away from my home school. This is a common
situation for students on the spectrum and represents a grave obstacle to
our legal right of a “free and appropriate public education in the least
restrictive environment”. I know that the success that I have achieved today
would not have been possible had I not returned to an inclusive school
setting where I learnt more about how to successfully adapt to the world
around me. Yet, as a result of bullying, many students face serious
emotional or physical injury if they remain in their home schools. This also
must be stopped. Florida remains one of a handful of states without true
anti-bullying legislation. I urge the legislators and activists here today
to address this problem.

Finally, I turn to the more controversial area of research. Here, the
autistic self-advocate community holds strong views that may clash with
those of some of the interest groups assembled today. The persistent focus
on both causation and cure in the autism research agenda has left promising
areas of research ignored would could positively impact the quality of life
for those of us on the spectrum. Despite extremely encouraging possibilities
in the realm of Assistive and Augmentative Communication (AAC) technology
for many individuals on the autism spectrum, research in this area is given
little to no funding. The development of best practices in service-delivery
and education is too often ignored. Mental health needs, restraint
reduction, health care access, transition, adult supports and a variety of
other educational and service/support needs could all benefit from more
research into best practices and effective methodologies. Yet quality of
life-oriented research in general is underfunded. If we spent one-tenth of
the money and attention we currently lavish on the idea of an autism cure on
communication technologies, countless, nonspeaking autistic people would be
able to communicate today. The fact that we have not pursued promising
avenues of research into communication possibilities should be a source of
great concern to us as a society.

There are also concerns that we have about the type of research that is
being funded. The autism spectrum represents a natural and legitimate part
of human genetic diversity. As a result, efforts to identify genes
associated with autism with the goal of developing a prenatal test, enabling
the possibility of selective abortion, should be met with opposition from
all those concerned about the issue of disability rights. Given the fact
that 90% of fetuses that test positive for Down Syndrome are aborted and
there exists a similar social stigma against the autism spectrum, I urge
both private foundations and government research institutions to re-orient
their funding away from research with eugenic applications. While we have no
position about the broad issue of abortion, the issue of eugenics is of
great concern to us.

Thank you for your time. If we as a society seek to fulfill the values we
espouse, we must take practical steps to establish ourselves as a culture
that respects neurological diversity in the same way that history has shown
us to respect racial, religious, national and other forms of diversity. We
on the autism spectrum can make significant contributions to the world
around us and, with the right supports, services and education, we can and
should be active and participating members of society. By pursuing the goals
of inclusion, respect and access, we can make that a reality. I’d like to
end with a quote from Jim Sinclair, the founder of Autism Network
International (ANI), the first autistic self-advocate organization and a
group from which much of the growing autistic culture developed from. “”The
tragedy is not that we’re here, but that your world has no place for us to
be.” Today, on the first World Autism Day, I encourage all of us to think
about what we can do to change that unfortunate reality and pursue a policy
of autism acceptance, now and into the future.

*
*

Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

In addition, here are Ari’s comments/thoughts on the days events:

Today, as you may be aware from the copy of my comments that went out
earlier, I addressed the Florida Autism Task Force meeting. I wanted to
share a few thoughts about how the day went. My general impression was that
it went positively. I followed a speaker who spoke at length about the
epidemic and vaccinations, so I had the opportunity to correct a number of
misconceptions. One of the things that surprised me in the response to my
comments is that it was overwhelmingly positive, despite my statements
against cure-related research and some off the cuff remarks I added talking
about how a cure is not only undesirable, but fundamentally impossible. I
also added in some information about how the “3 out of 4 autistics are
mentally retarded” statistic was inaccurate and explained a bit about the
work done by Laurent Mottron and Michelle Dawson, amongst others, on
intelligence testing and the autism spectrum – the previous speaker had also
referenced that inaccurate bit of information.
Following a period of applause, I took two questions on the issue of cure,
asking me to clarify my comments in relation to eugenics. I affirmed what I
had stated previously, and elaborated on the fact that many promising areas
of research funding were not being pursued as a result of a focus on
cure-oriented research. A question followed about the issue of person-first
language, in which I clarified our position on that matter, noting that the
preference of much of ASAN’s constituency is for identify-first or
identity-inclusive language rather than person-first language, though we do
respect the right of disability communities and even particular individuals
to make their own choices on the issue of terminology. A further question
discussed the issue of bullying, from which I elaborated on our work in
Maryland on the topic and promised to provide copies of draft legislation
Florida can utilize on this issue. Several other questions in this vein
ensued, discussing some of the issues in relation to adult supports and
education. I also had the opportunity, of which I, as always, availed myself
of, to comment on Autism Speaks and similar organizations. I made clear our
feelings on the organization, its funding decisions, its advertising and its
recent efforts to silence self-advocate voices.
One Task Force member had a particularly interesting comment to share. She
announced that, while she was not anti-cure, her 14-year old autistic son
was. This had led to a somewhat interesting situation in which he was
threatening to picket in protest at the local Autism Walk her organization
had helped organize. My comment in response to that was simply that we’d be
glad to provide him with flyers and news coverage, if he’s so inclined. 😉
I’ve also promised to put him in touch with other adolescents and young
adults on the spectrum and made some progress “converting” the mother to the
neurodiversity perspective. We pursued some interesting conversations with a
number of the representatives on the Task Force and we’ve received
commitments from several parent and professional organizations to work with
us in developing Florida ASAN chapters and to ensure that these chapters
have access to policymaking circles once we have established them. We’ve
been particularly successful in working with Parent Training Information
Centers in the past in other states and I think this will be no exception.
The Family Network on Disability, which arranged for my trip down to Florida
in the first place, is Florida’s PTI and their leader expressed strong
support for the neurodiversity movement and the idea of
services/supports/ education as the primary priorities for research rather
than the continued impossible and undesirable quest for a “cure”. Finally, I
had a somewhat fruitful discussion with Dan Marino, the co-Chair of the Task
Force and the former Quarterback of the Miami Dolphins. He has offered to
instruct his foundation to work with us to re-orient some of their research
funding towards more quality of life related avenues. My understanding is
that while they are by no means perfect, they are already pursuing some
funding in this vein and are open to providing for more in areas like
transition, communication and mental health. In the evening, I sat down with
representatives from the Family Network – both of whom were parents of
children on the spectrum (one with an Asperger’s diagnosis, the other who
was currently nonspeaking) . Both expressed opposition to the idea of cure,
concern about biomedical and ABA-oriented treatment methodologies and worry
at the lack of a strong neurodiversity presence in their home communities.
Support for an ASAN presence was strong, particularly in light of the
memories many of the people there had of the Ransom Notes ads and their
involvement in the disability community’s campaign to see them withdrawn.
I’m also hoping to connect them with the Autism Acceptance Project and some
other efforts, with the aim of building up the neurotypical ally wing of the
neurodiversity movement in that area.
All in all, it was an exceptionally productive day and I look forward to a
similarly productive one shortly.
I’m going to be headed to bed now – the Florida Autism Task Force’s second
day starts in less than six hours (I hadn’t realized what time it was while
I was responding to some of the important issues Charles raised and then,
again when I was preparing a press release I’m sending out tomorrow morning
about an exciting recent event in New Jersey. The disadvantages of
hyperfocus! 😉 ). All the best everyone, and feel free to e-mail me with
your comments and suggestions. Friday morning I will be meeting with other
local autism and disability rights groups in the Tallahassee area before
flying back to Baltimore.
Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autistic advocacy. org
732.763.5530



First Published Thursday, 3rd April, 2008.

It has been an absolute pleasure over the years to read, share news of, and cheer on jypsy and Alex’s advocacy efforts.  They are nothing short of an inspiration to many.  Their efforts have made a difference and continue to do so.  People such as Mr Howard, who have no genuine understanding of what it is to be autistic, will continue to do more harm than good.  He does not appear to accept ‘difference’ or place any value whatsoever on the autistic individual, yet he lives in and enjoys a society that was largely influenced by those ‘differently wired’.   Mr Howard, jypsy deserves a response and you would greatly benefit from her wisdom on such matters.


Julie


Wednesday, April 2, 2008

Running FOR Autism, not AGAINST it. Why we don’t support Run The Dream

So, there’s this guy….. who wants to run across Canada… (Okay, as the mother of a guy who wanted to run across his Province, I can relate…) So, he goes looking for a “cause” to raise awareness about and funds for, while he runs. His research brings him to Autism (or, more precisely, ASD – “Autism Spectrum Disorders”). Again, I can relate. Our Autism Celebration Run was about fulfilling Alex’s dream to run across Prince Edward Island, to raise awareness about Autism (ASD) and to raise funds to benefit our Island’s autistics .

The similarities between Alex’s “Autistic Celebration Run” and Jonathon Howard’s “Run The Dream” Run appear to end there. Alex ran FOR Autism, Mr. Howard is running AGAINST Autism.

Mr. Howard, while admitting his life is untouched by autism, is out to inform “Canadians who have been spared the burden of dealing with Autism” that autistics are a “burden for the rest of their lives” to our parents, family members, teachers and social support groups. He wants to “promote a unified and effective approach in Canada to dealing with Autism, and ultimately preventing it or finding a cure.

Complete Article:http://therunman.blogspot.com/2008/04/running-for-autism-not-against-it-why.html



First Published Thursday 3rd April, 2008.

A message from Ari Ne’eman:

Hello All,

I am proud to announce the creation of the Autistic Self Advocacy Network’s
first international chapter, the Autistic Self Advocacy Network – Australia
(ASAN-AU). With the founding of this chapter, ASAN will be able to expand
our current efforts to ensure the full representation of the autistic
community in autism and disability public policymaking as well as continue
our efforts to broaden access to the autistic culture and neurodiversity
movements on a global scale. The introduction of this new chapter makes ASAN
the first truly international autistic self-advocate organization engaged in
public policy and social change advocacy. This new chapter, the first of
many internationally, will enable us to share resources and expertise,
thereby increasing the capabilities of the autistic self-advocate movement
as a whole. Below my signature is a press release drafted by our new
Australian chapter, introducing some of the priorities for their efforts as
well as providing information about how to join their work. We look forward
to working with our Australian brethren to ensure that the promise of
“Nothing About Us, Without Us,” is fulfilled worldwide. Please feel free to
distribute this e-mail in its entirety.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

April 2nd, 2008
Members of the Australian Autistic Community who have long been involved in
Self Advocacy are pleased to announce formation of the Autistic Self
Advocacy Network Australia (ASAN-AU). ASAN AU is an affiliate chapter of the
Autistic Self Advocacy Network (www.autisticadvocacy.org)

About ASAN in America
The Autistic Self-Advocacy Network (ASAN) is a non profit organization run
by Autistics (those on the Autism Spectrum), with a membership including
those on the spectrum, those with other unique neurological types and
neurotypical family members, professionals, educators and friends. ASAN was
created to provide support and services to individuals on the autism
spectrum while working to change public perception and combat misinformation
by educating communities about persons on the Autism Spectrum.

About ASAN AU.
ASAN AU is run by Australian Autistic adults who have been involved self-
advocacy for a number of years and invites membership from autistic and
Asperger youth and adults who wish to receive support to engage in
self-advocacy.

ASAN AU understands the following:
•    Autistic citizens are capable of contributing to society and enriching
the lives of their families and communities.
•    While Australian society provides supports and accommodations for many
of its citizens, there is little understanding of the specific needs of
autistic children and adults.
•    Autistic adults want be involved in the planning of services to be used
by themselves and their peers. Inclusive and equitable services can only be
developed when stakeholders contribute positively towards promoting their
own wellbeing and connectedness to society.
•    Autistic adults want recognition of the fact that autism is a life long
condition that impacts both positively and negatively upon a person’s
ability to function in society.
•    Autistic adults recognise that a proactive stance means that the
thousands of children in early intervention and education programs now will
hopefully inherit a more effective      system and a more understanding
community.
•    Autistic adults are in need of support in the following areas:
Communication
Sexuality
Cultural identity
Accommodation
Crisis Management
Healthcare
Education
Criminal Justice
Advocacy
Employment
Socialisation

The extent to which autistic adults are and have been ignored saddens ASAN
AU members. All Autistic citizens are capable of contributing to society and
enriching the lives of their families and communities, but need the support
and acceptance of society as a whole.  An investment in the future of people
with Autism is an investment in the skills and talents that are untapped by
virtue of this group being a silent demographic.

CONTACT ASAN AU CONVENERS at asan-au@dodo.com.au
To join ASAN AU visit http://groups.yahoo.com/group/ASAN_AU/



aspie girl

The following is an excellent article and highly enjoyable read. Though published in September, 1999, remains highly regarded and circulated.


Asperger Syndrome and Girls
The Pattern of Abilities and Development of Girls with Asperger’s Syndrome
Dr. Tony Attwood
September 1999

The overwhelming majority of referrals for a diagnostic assessment for Asperger’s Syndrome are boys. The ratio of males to females is around 10:1, yet the epidemiological research for Autistic Spectrum Disorders suggests that the ratio should be 4:1. Why are girls less likely to be identified as having the characteristics indicative of Asperger’s Syndrome? The following are some tentative suggestions that have yet to be validated by academic research, but they provide some plausible explanations based on preliminary clinical experience. It appears that many girls with Asperger’s Syndrome have the same profile of abilities as boys but a subtler or less severe expression of the characteristics. Parents may be reluctant to seek a diagnostic assessment if the child appears to be coping reasonably well and clinicians may be hesitant to commit themselves to a diagnosis unless the signs are conspicuously different to the normal range of behaviour and abilities.

We have a stereotype of typical female and male behaviour. Girls are more able to verbalise their emotions and less likely to use physically aggressive acts in response to negative emotions such as confusion, frustration and anger. We do not know whether this is a cultural or constitutional characteristic but we recognise that children who are aggressive are more likely to be referred for a diagnostic assessment to determine whether the behaviour is due to a specific developmental disorder and for advice on behaviour management. Hence boys with Asperger’s Syndrome are more often referred to a psychologists or psychiatrist because their aggression has become a concern for their parents or schoolteacher. A consequence of this referral bias is that not only are more boys referred, clinicians and academics can have a false impression of the incidence of aggression in this population.

One must always consider the personality of the person with Asperger’s Syndrome and how they cope with the difficulties they experience in social reasoning, empathy and cognition. Some individuals are overtly active participants in social situations. Their unusual profile of abilities in social situations is quite obvious. However, some are reluctant to socialise with others and their personality can be described as passive. They can become quite adept at camouflaging their difficulties and clinical experience suggests that the passive personality  is more common in girls.

Each person with Asperger’s Syndrome develops their own techniques and strategies to learn how to acquire specific skills and develop coping mechanisms. One technique is to have practical guidance and moral support from one’s peers. We know that children with Asperger’s Syndrome elicit from others, either strong maternal or `predatory’ behaviour. If the person’s natural peer group is girls, they are more likely to be supported and included by a greater majority of their peers. Thus girls with Asperger’s Syndrome are often `mothered’ by other girls. They may prompt the child when they are unsure what to do or say in social situations and comfort them when they are distressed. In contrast, boys are notorious for their intolerance of children who are different and are more prone to be `predatory’. This can have an unfortunate effect on the behaviour of a boy with Asperger’s Syndrome and many complain of being teased, ignored and bullied by other boys.

It is interesting to note that some boys with Asperger’s Syndrome actually prefer to play with girls who are often kinder and more tolerant than their male peers. The author has conducted both individual and group social skills training with boys and girls with Asperger’s Syndrome. Experience has indicated that, in general, the girls are more motivated to learn and quicker to understand key concepts in comparison to boys with Asperger’s Syndrome of equivalent intellectual ability. Thus, they may have a better long-term prognosis in terms of becoming more fluent in their social skills. This may explain why women with Asperger’s Syndrome are often less conspicuous than men with the syndrome and less likely to be referred for a diagnostic assessment. The author has also noted that, in general, mothers with Asperger’s Syndrome appear to have more `maternal’ and empathic abilities with their own children than men with Asperger’s Syndrome, who can have great difficulty understanding and relating to their children.

When a child would like more friends but clearly has little success in this area, one option is to create imaginary friends. This often occurs with young girls who visualise friends in their solitary play or use dolls as a substitute for real people. Girls with Asperger’s Syndrome can create imaginary friends and elaborate doll play which superficially resembles the play of other girls but there can be several qualitative differences. They often lack reciprocity in their natural social play and can be too controlling when playing with their peers. This is illustrated in Liane Holliday-Willey’s autobiography.

The fun came from setting up and arranging things. Maybe this desire to organise things rather than play with things, is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment

When involved with solitary play with dolls, the girl with Asperger’s Syndrome has total control and can script and direct the play without interference and having to accept outcomes suggested by others. The script and actions can be an almost perfect reproduction of a real event or scene from a book or film. While the special interest in collecting and playing with dolls can be assumed to be an age appropriate activity and not indicative of psychopathology, the dominance and intensity of the interest is unusual. Playing with and talking to imaginary friends and dolls can also continue into the teenage years when the person would have been expected to mature beyond such play. This quality can be misinterpreted as evidence of hallucinations and delusions and a diagnostic assessment for schizophrenia rather than Asperger’s Syndrome.

The most popular special interests of boys with Asperger’s Syndrome are types of transport, specialist areas of science and electronics, particularly computers. It has now become a more common reaction of clinicians to consider whether a boy with an encyclopaedic knowledge in these areas has Asperger’s Syndrome. Girls with Asperger’s Syndrome can be interested in the same topics but clinical experience suggests their special interest can be animals and classic literature. These interests are not typically associated with boys with Asperger’s Syndrome. The interest in animals can be focussed on horses or native animals and this characteristic dismissed as simply typical of young girls. However, the intensity and qualitative aspects of the interest are unusual. Teenage girls with Asperger’s Syndrome can also develop a fascination with classic literature such as the plays of Shakespeare and poetry. Both have an intrinsic rhythm that they find entrancing and some develop their writing skills and fascination with words to become a successful author, poet or academic in English literature. Some adults with Asperger’s Syndrome are now examining the works of famous authors for indications of the unusual perception and reasoning associated with Asperger’s Syndrome. One example is the short story, “Cold” in `Elementals: Stories of Fire and Ice’ by A.S. Byatt.

Finally, the author has noted that some ladies with Asperger’s Syndrome can be unusual in their tone of voice. Their tone resembles a much younger person, having an almost child like quality. Many are concerned about the physiological changes during puberty and prefer to maintain the characteristics of childhood. As with boys with Asperger’s Syndrome, they may see no value in being fashionable, preferring practical clothing and not using cosmetics or deodorants. This latter characteristic can be quite conspicuous.

These tentative explanations for the apparent under representation of girls with Asperger’s Syndrome have yet to be examined by objective research studies. It is clear that we need more epidemiological studies to establish the true incidence in girls and for research on the clinical signs, cognitive abilities and adaptive behaviour to include an examination of any quantitative and qualitative differences between male and female subjects. In the meantime, girls with Asperger’s Syndrome are likely to continue to be overlooked and not to receive the degree of understanding and resources they need.

Reference:
Holliday-Willey, L. (1999) Pretending to be Normal: Living with Asperger’s Syndrome. London. Jessica Kingsley Publications


Paper Planes

First Published Monday 31st March, 2008.

COPING WITH AUTISM/AS DIAGNOSIS


Learning that your child is autistic/AS can be overwhelming initially. Many parents feel a ‘loss of control’. Many parents are thrown into grief-mode(this may be the case for both neurotypical and non-neurotypical parents). As is often said in various articles, rest assured, your child is still the same child you had prior to diagnosis.  You now can learn how best to help both your child and yourself move forward from this point.


I believe that if parents were informed of the positives of having autism/AS at the point of diagnosis, rather than having the ‘doom and gloom’, ‘tea and sympathy’ approach taken, the road to acceptance would be that much easier on parents. Knowledge is key.


I experienced the ‘doom and gloom’ approach first hand. I diagnosed my youngest son myself, when he was 4yrs, via library books. I took my findings to the local GP, CAMHS team and pediatrician, who agreed. I threw myself into researching, while in grief mode, desperate to understand what path is best taken, what educational approach, what future might lie ahead. On the internet I stumbled upon many doom and gloom stories, but desperately needed to hear some positives, to know that there was hope.


Little did I know that my entire family, extended family and many others, represented those very examples of hope so needed. It’s not at all uncommon for parents to realise that they too are on the spectrum, once their child is diagnosed.


My husband has enjoyed and continues to enjoy an amazing career in computing, has his own company, has a genius IQ and is a wonderful artist. Our eldest son is musically and artistically gifted, attended the Academy of Contemporary Music to obtain an Honours Degree, plays a multitude of instruments, composes and writes lyrics as well as teaching. Our daughter has worked with special needs children while in Secondary School, providing art experiences and is currently studying to become an Educational Psychologist. She is gifted musically, linguistically and artistically. She has traveled extensively, playing flute solo and with a Chinese orchestra. She was interviewed on Chinese TV. She has been through foreign exchanges in both China and Germany. I have worked with babies and children of all ages, including in my own business, for the past 20 years, was considered gifted in my field. All HFA/AS.


The message is “Acceptance not Cure”. Autism itself is not the problem. It can be managed with the right support and firm parenting/guidance. Intellectual deficit is another matter altogether and very much a separate issue to that of autism. Never underestimate your child’s potential. It isn’t easy raising an autistic child, or any child for that matter, but there are guidelines to help which will be covered here and in upcoming articles.


Never lose sight of the fact that you are incredibly crucial, needed and important in your child’s life. You will hopefully find your feet before you know it and become your child’s greatest advocate. You may well become the expert, possibly throwing yourself into learning as much as possible via the internet, support groups both online and off, and literature. Be warned though, that some literature will inevitably take the ‘doom and gloom’/ ‘tea and sympathy’ approach. There are many good books out there and I seek them out and advertise those in the fortnightly newsletter here. There are also many books around by admirable HFA/AS people who had rather terrible experiences in early life, but it’s important to look at the way autistics such as Temple Grandin and others were raised, for a positive picture of how it could and should be.


In order to help you understand(which many Neurotypicals do not or will not)that being autistic/AS is not a terrible experience for us; we do not “suffer” from autism as though it is a painful disease. In fact, quite the opposite for many of us. The following articles are highly recommended:


Jane Meyerding “Thoughts on finding myself differently brained”:

http://mjane.zolaweb.com/diff.html


Jane Meyerding “Why Are We So Unfriendly? Or: Hello, Friend, Now Please Go Away”: http://mjane.zolaweb.com/unf.html


Jim Sinclair “Don’t Mourn For Us”:

http://ani.autistics.org/dont_mourn.html


Temple Grandin’s writings are also recommended.


We are autistic and being autistic, makes perfect sense to us. When we become confused, thereby becoming anxious, it tends to be because we are expected by neurotypicals to operate in their chaotic, personal, emotional world which we are simply not wired to understand. Emotional language and sentiments are often not understood or desired, but if all is kept logical and action-based, we will understand and get on quite happily with you.


Pediatricians have been known to say “He will eventually grow out of it”. Autism is not some transient developmental stage or a disease or sickness from which we recover. Our brains are “wired” differently from neurotypicals. We are especially good at logical and mechanical processes, but have no innate capacity for empathy so we don’t tend to cope well with neurotypical relating and needs.


Autism is a difference in the order of child development due to different neurology, hence the term dis-order. Autism is a life-long difference. We are born autistic and remain so our whole lives, but with appropriate teaching and positive guidance, we can learn to fit and function in society. There are two major variables affecting the prognosis for life of a child born autistic:

  1. 1.  The ability of his family to provide a highly structured, disciplined(note: this does not =spanking) upbringing. Autism must not be an excuse for bad manners/behaviour.

  1. 2.  The innate intellectual capacity of the child. If a child receives strict parenting/social guidance/instruction, then his intellectual capacity is the factor that will hinder or allow him to become increasingly self-sufficient in society.


The higher the IQ, the greater potential for success in life. But, without appropriate social guidance/training in early childhood and beyond, an autistic person with a very high IQ can remain totally dysfunctional.


Provision of a highly structured daily timetable, making each day predictable to the child is essential and also aids in development of language/communication. Anxiety is our dominant emotion. We are extremely anxious people and need predictable structure. Changes can be frightening, but we still need to learn to cope with it and often must be pushed through our fears.


Be careful not to treat your child as an overgrown baby. Demand and expect appropriate social behaviour as she/he develops. Do not raise you voice or shout though, as you will raise his/her anxiety and you will be deemed as ‘unsafe’ and not ‘in control’. You must be in charge in your home. Control is vital. Either we are in control or you are. There is no middle ground on this issue. If you don’t take control, then we will.


Your child may be autistic/AS but he is also an individual. When he/she is feeling safe under your control, you will find a person with a different view of the world, with his/her own unique personality, sense of humour etc, but only if you provide the basic structure.



Further support:


Some helpful coping strategies:

(With thanks to Karen Siff Exkorn)


*Allow Yourself to Process and Accept Your Emotions


Many parents experience a rollercoaster of emotions, often associated with the stages of grieving described by Elizabeth Kubler-Ross. Parents may experience denial(“This is not happening to me”), Anger (“Why me?”), Bargaining (“I vow to be a better person if…”) and Depression (“My life is over”). Ultimately the goal is to reach the stage of Acceptance.


If you don’t allow yourself to acknowledge and respect your feelings, you may find yourself stuck in one of the stages of grief. Many parents do just that. It’s not uncommon for parents to experience different emotional reactions for differing amounts of time. Importantly, you mustn’t judge yourself harshly for having negative or overwhelming feelings. Parents who find themselves feeling depressed are often told it’s perfectly natural, but if it’s consuming you to the point where you are unable to function effectively to help your child, then professional assistance and support is at hand.


*Know that Men and Women Have Different Emotional Responses


Research shows that mothers and fathers respond differently to a child’s diagnosis. Overall, mothers seem to experience the impact of a child’s diagnosis more intensely than fathers(Sharpley, Bitsika and Efremidid (1997); Seltzer (2001). Mothers respond with more depression and guilt to a child’s diagnosis than fathers (Gray 2003). Their guilt is often manifested through expressions of regret: “If only I had eaten a healthier diet during my pregnancy” or “I should have noticed my child’s symptoms earlier.” Mothers also are more open to venting their feelings about the diagnosis, whereas fathers tend to suppress their emotions.


As you can imagine, the gender differences in responses can cause tremendous stress on a marriage. Communication can break down as couples express emotions differently or not at all.


Just as it’s important not to judge your own emotional state, it’s important not to judge your spouse’s. For some, a ‘couple’s therapist’ has been beneficial, while others manage to sort through issues on their own, over time.


*Go into action mode to help your child. Be proactive rather than reactive. Try to separate your heart from your head. This is the easiest and most effective way to deal with helping your child receive any extra help he/she may need(ie speech therapy, OT etc). Be aware of so-called ‘treatments’ that can be more harm than good(eg chelation and a multitude of others) and those whose only interest is making money from vulnerable parents.


The ability to make intelligent, informed decisions on your child’s behalf is based on your ability to actively pursue the right information. There is alot of information out there, and it’s important to focus on what is best in terms of your individual child’s needs. Read books, speak with professionals – autistic people(others parents). Be proactive.


*Give yourself a break.


After your child is diagnosed, helping him/her can become the primary focus of your life. Remember – you must help yourself in order to help your child. You must carve out time for yourself, even if initially it’s only a few minutes a day to take a walk, meet a friend for lunch, or do something that’s unrelated to autism. Taking breaks, however difficult, allows you to re-energize and take control of your life. Taking care of yourself helps you to be a better parent.


Finally in closing, please remember:


“To want a so-called “normal” life for one’s child is actually a part of loving that child. The good parent wants his or her youngster to grow up happy, loved, feeling confident, and to be able to live a fulfilling life. Having autism does not destroy those potentials; it only alters their course. It changes how things must be accomplished. It creates a fascinating, complex individual who stands out and is remembered, even for little things. Instead of trying to push a “normal” life upon a person with Autism, the goal should be re-evaluated. Those who are autistic will always be autistic. They will have unusual behaviors and distinctly different thought patterns. They will have their personal routines and rituals. They will always exist apart from the regular flow of life. This is a blessing and a type of freedom.”


Enjoy your child and remember, you are not alone.




Solo girl

First Published Sunday, 30th March, 2008.

Autism, Elective Mutism & Early Childhood


It is estimated that one in four or five of all those on the spectrum, never speak, but remain mute all their lives.


Both I and my daughter were elective mutes as children. It was school, that particularly hastened the need for verbal withdrawal. It wasn’t that we couldn’t speak, but that particular events such as death, illness and starting school were simply overwhelming. We were extremely well-read, and like many Aspies, were reading fluently from as early as 3yrs. When you’re autistic, very young and your Sense of Self is literally turned upside down, it’s not hard to understand why loss of speech occurs. It is said that Asperger girls do tend to be more quiet and reserved, well-behaved. Not in all cases of course, but this was certainly the case for us.


Home in both mine and my daughter’s case as young children, was sanctuary. My mother instinctively knew that I required strict routine. She was a dream parent in every way. My parents ran a tight ship, and had the recipe just right – strict(the rules were the rules) but warm and kind. My mother was not only very beautiful both internally and externally, she loved being a wife and mother, as I do. She was more than a mother though, she was most importantly my ‘teacher’. She bathed me in books from birth, she sat with me and guided me through every conceivable activity that any pre-school could ever have offered and more. I wasn’t closeted. She took me out into the world, introduced me to the theatre, to music, to art and creativity. I learned to appreciate every little thing. I went on to do the same with my own three children[all AS] and the multitude of children, many with special needs that came into my care from the time I turned 21 till now. I was always ‘doing’, never left to drift afloat as a child. That’s not to say I wasn’t given time to explore the world on my own. We were never allowed to wander or play in the streets, nor would we have wanted to, but we certainly had a wonderful, tropical haven of a yard to play in and plenty of discoveries were made therein.


At home, my inner world was radiant and every day was an adventure.


As a young child, thankfully, I was not over-exposed to television. It was kept absolutely minimal. I say, thankfully, because growing up in Queensland, it just doesn’t do to live your life indoors with that perfect climate day in, day out. I have autistic friends and acquaintances to whom TV was a very important factor for them as they were growing up, important to their sense of well-being(namely a wonderful author whose books and site I highly recommend. [You’ll find him in the following Newsletter – http://www.aspie-editorial.com/?p=123. In my case, I much preferred to be outdoors, where my imagination and creativity knew no bounds. The myth that autistic children have no imagination has surely been altered by now. My aspie brothers(who all later went on to become entrepreneurs), were inventor-types and incredibly creative and imaginative. We were always busy doing something interesting, be it building our own state-of-the-art go-carts, making a gramaphone from scratch, creating home-made films, photography(when polaroid instamatic cameras were new, one particular brother, already showing signs of the business skills he was later to fully utilise, would charge so much per photo), swimming in the ocean, painting, composing music, poetry, building tree houses, climbing trees, assembling and painting bicycles, creating elaborate cities and roads in the soil for those matchbox cars, which had been customarily lined up and categorized when we were very young. I was taught to take care of dolls as though they were real babies, washing and hanging their clothes on the miniature doll’s clothes line, bathing them, feeding them – all in all, a dream childhood. We were in no way financially wealthy, as my Dad was a carpenter with six children, but we were happy.


True to our autistic natures, we never particularly wanted ‘friends’ to come play. We preferred our own company, doing our own thing, sometimes coming together to enjoy activities, but more often than not, were happiest in our own space, keeping the ‘other’ at a distance. Contact with ‘friends’, was quite honestly not even desired. Let’s face it, bringing an outsider into an an autistic child’s world, is like an invasion of sorts. To later learn that as autistics, we are referenced to people, settings, places, put it all into perspective.


All good things must come to an end though, and elective mutism was not far off. The world came crashing down all too swiftly, just a few days after my 4th birthday. I’d been sitting on my mother’s lap, as she’d had a guest come visit. We aspies don’t tend to cope so well with guests(our anxiety rises dramatically) and so I clung to her, much as my daughter clung to me, hid behind my skirts when younger and guests appeared. She’d been complaining of severe headache and once the guest departed, she needed to lay down, which for her was most unusual in the daytime. By that evening, we’d lost her – cerebral haemorrhage. She was just 35 years old, my youngest brother, just a baby still.


I didn’t cry. My behaviour was never outwardly that of a regular grieving child. Why would it be? I was autistic, very autistic. I was grieving though. I never stopped. I still do, for what would have been and what could have been saved. I was to cry 4 months later, at school, every day for months. I wanted her back and I needed the sanctuary of home. Poor teachers! I became a runner, running home from Infant’s School, to hide under my father’s car. Breaktimes were the worst and that was when I chose to run, staff unawares till class resumed. I must have prematurely aged my poor father with worry, who always knew that something wasn’t quite right, but who accepted me for who I was. My mother had been my guardian and protector from all things bad in the world. My father(High functioning autistic) was utterly grief-stricken. He’d adored her upon first glance at a local Brisbane dance. They married when she was a mere 17, and he was 21yrs of age. They were a wonderful match. She was a gentle yet strong neurotypical, very womanly, very intelligent and well read. He was in many ways child-like and in need of a strong woman. It ended too soon. I stayed silent for many years. I later went on to become a highly-graded and well-received public speaker at Schools and Universities, severe anxiety, heart palpitations well-hidden from view.


A paragraph from the New York Times article “The Child Who Would Not Speak A Word”:


“One of the most puzzling aspects of selective mutism is the fact that children stay silent even when the consequences of their silence include shame, social ostracism or even punishment. This paradox may be explained by the fact that at the heart of the disorder is the instinct for self-preservation, the natural urge to avoid frightening situations.”


I can tell you that having been psychologically and physically harmed by a substitute teacher over a two week period, despite being a well-behaved and high-achieving student, that shaming and punishing a child, because they are ‘too quiet’ does not make them want to talk. Being terrified, threatened and harmed does not make one less terrified. I felt well-liked and accepted among my peers, children wanted to befriend me. I was nicknamed ‘dolly’ by a loving and kind sister(AS), as I apparently had that particular look(was blonde, blue-eyed).  No particular ‘look’ is going to spare or save a child from their vulnerabilities though. It’s little wonder that those with ‘special needs’ are perfect targets for abusers, especially the ‘silent ones’. My understanding is that the current rate of abuse for those on the spectrum sits at around 85%.


There is a most wonderful book, recommended to me by an incredibly gifted and highly regarded man, who happens to be HFA. The book is entitled “Dibs – In Search of Self” and the author, Virginia M. Axline.


This is the story of a little boy named Dibs.


He would not talk. He would not play. Judged mentally defective, he was oblivious both to other children and to his teacher; in reality he was a brilliant, lonely child trapped in a prison of fear and rage, a prison from which only he could release himself.


For further information…


Links for elective/selective mutism:


Donna Williams “Selective Mutism”:
http://www.donnawilliams.net/selectivemutism.0.html


“Help Me To Speak programme…Seen But Not Heard…What causes Selective Mutism…Seeking Help…Treatment…Longterm Outlook…Related Articles”:
http://www.channel4.com/health/microsites/F/family/problems/mutism.html


Advice and assessment “Educational-psychologist”:
http://www.educational-psychologist.co.uk/mute.htm


Selective mute “Is your child mute or just shy?”:
http://www.essortment.com/all/muteselective_rdpb.htm


New York Times Article “The Child Who Would Not Speak A Word”:


“Until recently, the disorder was thought to be extremely rare, affecting about 1 child in 1,000. But a 2002 study in The Journal of the American Academy of Child and Adolescent Psychiatry put the incidence of selective mutism closer to 7 children in 1,000, making it almost twice as common as autism.”http://www.nytimes.com/2005/04/12/health/psychology/12mute.html?ei=5088&en=000d9e93a736ada0&ex=1270958400&adxnnl=1&partner=rssnyt&adxnnlx=1206817367-tjnRxJJbTazWAgyQG5xEVA


“Selective Mutism: Breaking the Silence”:http://aspie-editorial.blog-city.com/selective_mutism_breaking_the_silence.htm


“Selective Mutusm: Speaking Up For Silent Treatment”:http://aspie-editorial.blog-city.com/selective_mutism_speaking_up_for_silent_treatment.htm


[As an aside: Delay and abnormality of speech for those on the spectrum is very common. Kanner considered them to be an essential part of his syndrome, with difficulties varying in severity. So far as being mute goes, it’s been estimated that one in four or five of all those on the spectrum, never speak, but remain mute all their lives. Some are able to produce accurate copies of animal or mechanical noises and perhaps a single word once in a blue moon, but do not progress beyond this.]


1. Carol and Eli Surber left…

Monday, 4 May 2009 2:35 am

Selective mutism? I have read so many of Donna’s wonderful books. She has answered many unanswered questions for me. My son, Eli, stopped speaking at age three. He knew about 150 words…then just stopped. He did say one or two words sometimes. Now at age 32, he has a language of words no one understands but me. He has made up words, but mumbles mostly to himself. Never really anything we understand. He can ask for things in one word, He curses well, and in perfect timing to his situation. He is a quiet soul, but he does laugh! Carol




Kangaroo Country

HEADLINES


“Torture death shocks Illinois town”:

http://news.yahoo.com/s/ap/20080322/ap_on_re_us/torture_slaying;_ylt=AltmNg96fFa_3Dd6NV7bT59H2ocA


“Woman found guilty of starving autistic sister to death”:

http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=6395


“Special needs children need more help, says report”:

http://education.guardian.co.uk/schools/story/0,,2266969,00.html


“N.M. Health Secretary: Vaccine benefits outweigh risks”:

http://kob.com/article/stories/s370353.shtml?cat=504


“Public health risk seen as parents reject vaccines”:

http://www.starnewsonline.com/article/20080321/ZNYT04/803210420/1002&title=Public_Health_Risk_Seen_as_Parents_Reject_Vaccines


“Legislators Battle For Healthcare Mandates”:

http://www.ocala.com/article/20080317/NEWS/803170320/1002/NEWS&source=RSS


“Officials try to calm fears about vaccines, autism”:

http://www.latimes.com/features/health/la-na-vaccines7mar07,1,2833254.story?track=rss


“Disability rhetoric must be made reality”:

http://www.guardian.co.uk/society/2008/mar/12/learningdisability.socialcare


“Disabled care centre is reprieved”:

http://news.bbc.co.uk/1/hi/wales/north_west/7283340.stm


“Burrage passionate about legislation”:

http://www.paulsvalleydailydemocrat.com/statenews/cnhinsall_story_077142300.html


ZOLOFT “Drugs course made girl suicidal”:

http://www.theaustralian.news.com.au/story/0,25197,23406160-23289,00.html


“Cure worse than the ill”:

http://www.theaustralian.news.com.au/story/0,25197,23404199-23289,00.html


“Autism Cymru’s third international conference in Cardiff, April 22-23, 2008”:

http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=6409


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RESEARCH


“Leaky gut autism theory doubted”:

http://news.bbc.co.uk/1/hi/health/7300327.stm


“MMR vaccine ‘does not cause autism’ – latest study”:

http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=6397


“Study finds no link between MMR jab and autism”:

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=537829&in_page_id=1774&ito=1490


“Epilepsy ‘could affect non-motor neurons in autism,’ say Spanish researchers”:

http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=6394


“Progress reported in Fragile X research”:

http://www.postchronicle.com/news/science/article_212135257.shtml


“Gene for brain connections linked with autism”:

http://www.straitstimes.com/Latest%2BNews/Tech%2B%2526%2BScience/STIStory_218356.html


“Brain network linked to contemplation in adults is less complex in children”:

http://www.sciencedaily.com/releases/2008/03/080306193230.htm


“Iranian study: Autistic children no more likely to have coeliac disease”:

http://www.autismconnect.org/news.asp?itemtype=news&section=000100010001&page=12&id=6173


“Schizophrenia memory differences”:

http://news.bbc.co.uk/1/hi/health/7289245.stm


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ADD/ADHD


“adders.org” – Our objective is to promote awareness to AD/HD (Attention Deficit/Hyperactivity Disorder) and to provide information and as much free practical help as we can to affected by the condition, both adults and children, their families in the UK and around the World via this website.

http://www.adders.org/


“ADHD Pages”:

http://www.adhd.org.uk/


“Are the Comorbid Conditions of ADHD the Same Impairment?”:

http://www.hi2u.org.uk/articles/comorbid_by_cbh.html


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GENERAL/HUMAN INTEREST


NAS “Think Differently About Autism”

Autism also affects adults.

Most are isolated and ignored. Think. Act. Transform lives.

http://www.think-differently.org.uk/


NAS “I Exist: the message from autistic adults”:

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1558&a=15394


NAS “Join Thomas and Friends Live in London”:

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=228&a=15758


“India launches new site”:

http://www.disabilityindia.com/html/news.html#web


“Brave youngster honoured at awards ceremony”:

http://www.theargus.co.uk/news/generalnews/display.var.1900726.0.brave_youngster_honoured_at_awards_ceremony.php


“Burgaw woman learns syndrome is what makes her feel different”:

http://www.starnewsonline.com/article/20080319/NEWS/803190346/1017&title=Burgaw_woman_learns_syndrome_is_what_makes_her_feel_different


“Young adults with Asperger’s syndrome working on people skills”:

http://www.nctimes.com/articles/2008/02/17/lifeandtimes/17_27_352_16_08.txt


“Legos a building block in autism therapy”:

http://www.modbee.com/2032/story/245039.html


“Using theater as a tool for autism”:

http://www.kfsm.com/global/story.asp?s=8046184


BBC Health “Autism/Asperger Syndrome”:

http://www.bbc.co.uk/health/conditions/autism1.shtml


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EDUCATION


“Half of the children who fail key tests have learning difficulties”:

http://www.timesonline.co.uk/tol/life_and_style/health/child_health/article3549316.ece


“School left in dark gets apology”:

http://news.bbc.co.uk/1/hi/england/kent/7298569.stm


“Autism no longer obstacle for students seeking degree”:

http://www.bclocalnews.com/okanagan_similkameen/kelownacapitalnews/news/16887616.html


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EMPLOYMENT


“Auties.org”

Auties.org is an Aspie & Autie friendly site for all people on the Autistic Spectrum who are ready to dare reach out to occupation and employment, open the doors to the community and market their abilities directly to the public and for those interested in supporting these pioneers.

http://www.auties.org/


“Autism Jobs”

Linking job seekers with vacancies in work related to autism, Aspergers and ASDs

http://www.autismjobs.org/?section=00010009


Copenhagen, Denmark

“Specialisterne”

We Make A Difference

Many of the world’s great minds have reached astonishing achievements due to persistence, learning faculties, a structured way of thinking, and attention to details.

Albert Einstein, Socrates, Charles Darwin, and Sir Isaac Newton were all probably affected by a mild form of Autism Spectrum Disorder (ASD) called Asperger’s Syndrome.

If they had not met the criterieas for Asperger’s Syndrome, they would probably not have been able to achieve the same degree of competence that helped them change the world as we see it today.

Times have changed – modern society has increased its demands to the capabilities of the employees in the areas of social interaction, communication, and adaptability – exactly those areas, where Einstein and those like him, could not cope.

Society’s social demands to employees have consequences for people with ASD. In spite of their special competences, most have difficulties finding and keeping a job.

At SPECIALISTERNE we are organized to meet the requirements of persons with ASD in order to create an optimal working environment.

Did you know?

Did you know that close to one percent of the population meet the characteristics of Autism Spectrum Disorder (ASD)?

  • Did you know that most people with ASD do not get the necessary support because of lack of ASD knowledge?

  • Did you know that the business community realises a growing need for specialists?

  • Did you know that people with ASD are natural born specialists?

http://www.specialisterne.dk/html/english/Home.html


“Able and Willing”:

http://www.guardian.co.uk/media/2008/mar/24/channel4.disability


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SPORT


“Cycle China 2009”:

http://www.getmilesmore.org.uk/event_details.php?id=50


“Flora London Marathon 2008”:

http://www.getmilesmore.org.uk/event_details.php?id=11


“Volunteer at the Flora London Marathon 2008”:

http://www.getmilesmore.org.uk/event_details.php?id=58


“Flora London Marathon 2009”:

http://www.getmilesmore.org.uk/event_details.php?id=47


“The Tulip Bike Ride 2008”:

http://www.getmilesmore.org.uk/event_details.php?id=42


“Tandem pairing ready for action”:

http://news.bbc.co.uk/sport1/hi/other_sports/disability_sport/7310892.stm


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MUSIC


“Autism the Musical”:

http://www.autismthemusical.com/index.php?session=myhomepage&id=


“Autism the Musical on HBO”:

http://www.dispatch.com/live/content/life/stories/2008/03/25/2_TV_AUTISM_ON_HBO.ART_ART_03-25-08_D5_KS9O1J5.html?


“Music for Autism”:

http://www.musicforautism.org/


“The Jazz of Matt Savage”:

http://www.savagerecords.com/


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ART


“The Stephen Wiltshire Gallery”

http://www.stephenwiltshire.co.uk/members_area.aspx


Stephen Wiltshire has been the subject of numerous documentaries and one man exhibitions since his discovery in the 1980’s when he was nine.

Stephen is an autistic savant whose gifts include the ability to retain visual photographic memory recall of people and places. This enables him to draw with near perfect accuracy, representations of city skylines and architectural scenes.

Stephen likes to work both on small and large scale. Some of these extraordinary drawings measure over 9ft in length, others are much smaller and more intimate. However, all possess his astonishing virtuoso draughtsmanship skills.

Stephen Wiltshire was awarded an MBE in January, 2006.


“Autism Art Website”:

http://www.autismart.org/


“Tactile art for blind on show”:

http://news.bbc.co.uk/1/hi/wales/mid/7301651.stm


“The Genesis of Artistic Creativity”

Asperger Syndrome and the Arts

Author: Michael Fitzgerald

http://www.jkp.com/catalogue/book.php/isbn/1-84310-334-6


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MOVIE NEWS


“Benx”

http://www.benx.be/eng/defilm.asp


Ben is different.


His life is a universe to itself, where he plays his favourite online computer game Archlord avidly, trying hard to train himself for the real world he lives in. The harsh world of a technical school is for him a daily kind of hell.


As the horror of being a daily subject to bullying grows, Ben devises a plan. Then Scarlite comes into his life, the girl he has met in his on-line game. That wasn’t part of the plan…


Ben is different. We see this in the way he gets up, washes himself, gets dressed, eats,…with all sorts of rituals and according to established patterns every day. We even notice it in his manner towards his mother and little brother. It shows when he walks in the streets with his walkman on his head with loud and booming music, tensed and very insecure… His life is a universe to itself, where he plays his favourite online computer game “Archlord” avidly, trying hard to train himself for the real world he lives in. The harsh world of a technical school is for him a daily kind of hell and drives him to extremes.


His Mother: A strong woman. She never gives up the fight for her son, despite the fact that she never gets closer to him and never receives a single sign of affection from her oldest son. It cost her a divorce and half of her life. But she wants to and she will find Ben. Whatever world he may be in. This story is also the story of her struggle and her amazing deed at the end to help organizing the revenge of her son.


His Father: A man beaten by life. At home the big absentee. He was the man who couldn’t cope. With his marriage. With his son. The impotence that he couldn’t help his son drives him to his first exceptional deed.


Scarlite: Bens chat-girlfriend with whom he has been playing for a long time in the virtual world of “Archlord”. She’s a mystery for his environment, but the great love of Ben.


“Poignant “Autism” has joyful message”:

http://seattletimes.nwsource.com/html/television/2004297958_autismtv24.html


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BOOKS


New “Asperger Meets Girl

Happy Endings for Asperger Boys”

Author: Jonathon Griffiths

Foreword by Hugh Jones

http://www.jkp.com/catalogue/book.php/isbn/9781843106302


New “Anger Management Games for Children”

Author: Deborah M Plummer

Illustrated by Jane Serrurier

http://www.jkp.com/catalogue/book.php/isbn/9781843106289


New “Asperger Syndrome and Employment”

Adults speak out about Asperger Syndrome

Edited by Genevieve Edmonds and Luke Beardon

‘This is the book we need for guidance on employment for people with Asperger’s syndrome. The contributors describe their employment experiences and offer sound advice. I thoroughly enjoyed reading the success stories and took note of the words of warning of what not to do.’
– Professor Tony Attwood, author of The Complete Guide to Asperger’s Syndrome

http://www.jkp.com/catalogue/book.php/isbn/9781843106487


“Autistic Planet”

Winner of a Gold Medal in the Moonbeam Children’s Book awards Non-Fiction picture book category

Author: Jennifer Elder

Illustrated by Mark Thomas and Jennifer Elder

http://www.jkp.com/catalogue/book.php/isbn/9781843108429


Take Care,

Julie
globe