Colleagues,
I am writing to share a Call for Abstracts for a special issue of The Review of Disability Studies, a peer-reviewed, multidisciplinary, international journal. Founded by the late Dr. David Pfeiffer, RDS is published by the Center on Disability Studies at the University of Hawai‘i at Manoa. Follow this link http://www.rds.hawaii.edu/announcements/06032011/ or read the description below. Feel free to contact me directly with any questions.
Writing the global family: International perspectives on disability studies and family narratives
We live in the Golden Age of the memoir. Everyone has a story to tell, and a growing number are finding their way to publication. The disability memoir has certainly been a part of this growth. It is refreshing to note how many of these recent narrative accounts of living with a disability have been written from what might be broadly termed a “disability studies perspective” taking on a more critical, socio-cultural orientation than the traditional ‘inspiration in the face of personal tragedy’ motif. Beyond the personal memoir, there has been a similar explosion of memoirs written by family members of individuals with disabilities (parents, siblings, children). However, unlike the personal memoir, relatively few of these “family narratives” have adopted a clear disability studies perspective.
It is this personal and socio-cultural negotiation with the (re)interpretations of disability from various family perspectives that we will focus on in a special issue of the Review of Disability Studies. The goal for the special issue is to bring together narratives (autoethnographic work, reflective essays, memoirs, etc.) where disability is located within a family context of some kind. We are seeking a global perspective for the issue by including articles representing a variety of cultures and traditions. The unifying theme will be that all submissions will explicitly combine the personal with the scholarly, using a disability studies orientation.
Some of the questions potential authors might address would include:
• How do family narratives compare and contrast with personal narratives in giving authentic voice to the disability experience in society?
• How do race and culture intersect with family systems to shape the meaning of disability?
• How does the location of a disability within a family system (i.e. who is the person with the disability label – father, mother, brother, sister, son, daughter) shape the experience?
• How relevant and helpful is a disability studies lens to family experiences in developing countries?
• How do the functional implications of specific impairments shape the family experience of disability?
• What are the experiences of non-traditional families where there is a disability present?
• How have family experiences with disability changed over time?
We welcome contributions from all disciplines as long as they touch upon this issue of family narratives within disability studies. Our Call for Abstracts is not limited only to first-person stories, as we are open to other possibilities such as co-constructed authorship, especially in instances where socio-economic circumstances or cultural histories have restricted the person experiencing disability or their family members from publishing critical stories.
Send 250-word abstracts by September 1, 2011 via email to Guest Editors Phil Ferguson (College of Educational Studies, Chapman University) [log in to unmask] and Janet Sauer (College of Education, University of Colorado at Colorado Springs) [log in to unmask] Please be sure to send abstracts to both editors. For the accepted abstracts, we will request completed articles March, 2012 of approximately 3000-5000 words that will undergo anonymous peer review. Note that an invitation to submit an article based on an abstract does not guarantee publication of that article in The Review of Disability Studies. The RDS Managing Editor reserves the right to deny publication of any article. For more information about The Review of Disability Studies, and formatting guidelines please go to http://www.rds.hawaii.edu/
Janet S. Sauer
Assistant Professor
Special Education
Columbine Hall 3035
University of Colorado at Colorado Springs
1420 Austin Bluffs Parkway
Colorado Springs, CO 80918
Office 719.255.3701
FAX 719.255.4110
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Sent: Sunday, June 12, 2011 5:00 PM
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Subject: DISABILITY-RESEARCH Digest - 10 Jun 2011 to 12 Jun 2011 (#2011-136)
There are 3 messages totaling 3295 lines in this issue.
Topics of the day:
1. an opportunity for increasing the visibility of disability studies
2. FW: Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY
THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER
NETWORKS!!!
3. Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY
THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER
NETWORKS!!!
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Date: Sat, 11 Jun 2011 17:35:27 -0600
From: Gregor Wolbring <[log in to unmask]>
Subject: an opportunity for increasing the visibility of disability studies
As President of Canadian Disability Studies Association (CDSA) I am excited to highlight the below collaboration with the Canadian Federation for the Humanities and Social Sciences.
I am extending to you on behalf Dr. Malinda S Smith
Vice-president, Equity Issues, Canadian Federation for the Humanities and Social Sciences and CDSA the below opportunity to write an entrée for the equity blog of Canadian Federation for the Humanities and Social Sciences.
http://blog.fedcan.ca/category/equity-matters/
I want to thank Malinda S Smith and the Canadian Federation for the Humanities and Social Sciences
for partnering with us and giving us this opportunity.
Please consider writing something and email Malinda with your inquiry and topic suggestion
.
Find below the following from Dr. Malinda S Smith
Malinda envisions to post one entry per week on a range of topics related to disability studies from June till Sept
Here guidance is as follows.
1. It is a collaboration between the Federation's Equity Issues Portfolio and the Canadian Disability Study Association.
2. The entries will be posted every Thursday on 'Equity Matters' on the Fedcan blog, beginning 16 June 2011. We are seeking entries for 7 July, 14 July, 21 July, 28 July and for August and September. We would like to identify specific contributors for each date. The series will continue as long as there is interest.
3. Entries could cover any aspect of disability studies in higher education, as it relate to human rights and social justice, to public policy, health and wellness, innovation and creativity, sports and culture, nanotechnology, disabilities in historical and comparative context, etc etc.
4. The blog entries should be written in plain language and should be no more than 1500 words.
5. They may be written in English or French.
6. The audience includes scholars, students and administrators in the academy, as well as policymakers and the broader public.
7. The readership is some 50,000, with two-thirds in Canada, and many others across Europe, and on every continent.
8. Finally we do not use intext referencing but can hyperlink to online and open-access materials. If there are recommended podcasts and videos we would like to link to them as well.
Enquiries should be sent along to:
Dr. Malinda S Smith
Vice-president, Equity Issues, Canadian Federation for the Humanities and Social Sciences
Email: [log in to unmask]<mailto:[log in to unmask]>
(or CFHSS Policy Analyst Karen Diepeveen at [log in to unmask]<mailto:[log in to unmask]>)
Please cc also Gregor Wolbring President of CDSA [log in to unmask]<mailto:[log in to unmask]> Thanks!
________________End of message________________
This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies).
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Archives and tools are located at: www.jiscmail.ac.uk/lists/disability-research.html
You can VIEW, POST, JOIN and LEAVE the list by logging in to this web page.
------------------------------
Date: Sun, 12 Jun 2011 18:28:44 +0100
From: Colin REvell <[log in to unmask]>
Subject: FW: Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER NETWORKS!!!
Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER NETWORKS!!!
With Thanks
God Bless
Colin Revell..... see below...
Managing Meltdowns
Taken from:- http://www.aspergermanagement.com/managing-meltdowns
Submitted by Malcolm on Sat, 08/29/2009 - 07:24.
When I saw Managing Meltdowns: Using the S.C.A.R.E.D: Calming Technique with Children and Adults with Autism by Deborah Lipsky and Will Richards it immediately caught my attention.
The reason being is because I feel that it is a hugely important subject – about which little specifically has been written - and, secondly, because it was I believe brave of the authors to tackle what is really a very specialist and quite narrow subject matter. It can’t, therefore, have made it an straightforward subject to write a whole book about.
I am pleased that they have however because, though the book is not that long (just 80 pages) it provides invaluable insight for all people with Asperger Syndrome (AS). In a management context, I believe it assumes even greater importance.
I have often felt anxious and under stress as a manager with AS throughout my career and, on a couple of occasions, have cognitively shut down. I have, though fortunately suffered only one true meltdown. It was whilst I was at the BBC and it was extremely disconcerting; it also created a very negative impression.
The book begins by outlining the monotropic nature of the cognitive style of those on the autistic spectrum and how narrow, deep, non-social and unconnected interests provide a degree of safety and control.
It starts by defining a Meltdown as an extreme emotional/behavioural response to stress or overstimulation, triggered by a “flight or fight” response created by heightened anxiety which causes the individual to switch to an instinctual survival mode. Though a natural human response, for an autistic person it can have highly negative consequences as it is accompanied by cognitive impairment, perceptual distortion and a narrowing of sensory experience.
Meltdowns are time limited and are caused by “sensory overloads” - an overwhelming situation, sensory or cognitive overload, novel situations or sudden change, transitions or reactions to severe stress and a shutting down of the sensory systems. This results in cognitive dysfunction, panic and the individual may become hypersensitive. Afterwards, there may be feelings of shame, remorse or even humiliation.
According to Lipsky and Richards, meltdowns are not however temper-tantrums. To the outside world however, catastrophic reactions do look extremely bad and frightening. The key, according to the authors, is understanding how an autistic person reacts to danger to de-escalate the situation by developing a form of control when an overload occurs in the brain.
When this happens the brain needs “down time” to regroup. The initial response is often to freeze cognitively which is what happened to me at the BBC. If flight is not possible, an individual may become combative. I think that this happened as well, though I became more agitated than combative.
To combat this, the authors believe autistics create predictable worlds; ones that contains routines which provide a sense of security. Script responses are developed to respond to perceived threats, but these can be problematic if the script does not match the situation. What this is saying to me is that each individual has to develop a personal strategy that can be called upon when a meltdown is pending.
S.C.A.R.E.D is what the authors believe is the solution. It stands for safe, calm, affirmation, routine, empathy and develop - securing an environment that is safe and secure. The main method of achieving this is by being alone and removing the unwanted stimulation – something that I have found to be the only ameliorative and effective action.
Calmness involves remaining in control by not processing what is happening, but talking in a strong, reassuring and literal manner. Affirmation is ensuring that others contribute positively to resolving the situation by not challenging the person further and reassuring them by name.
The maintenance of routines ensures that the individual can remain within a comfort zone until the catastrophic reaction is over. The individual can then be helped to repair any situation.
The “E” or empathy is understanding the person from their (unique) perspective by not belittling them and acknowledging their fear. Finally, developing (develop) an intervention plan can help reduce the frequency, duration, intensity and negative outcomes of any meltdown. This should be geared towards the individual’s specific requirements, (this is what I feel is the key requirement).
According to the authors, though careful planning and scripting can be helpful, they cannot prevent all meltdowns. There are some events and circumstances that are beyond control. However, planning and scripting can be extremely beneficial in decreasing the probability of meltdowns in many situations.
It is also helpful to have a back-up plan should any primary plan go off script. Scripts are very important here for autistics individuals as they help prepare for novel situations.
The book then identifies and explores the different types of meltdowns. The most familiar are the outward explosive behaviours that draw most attention, i.e. when individuals disengage or shut down and withdraw from the world around them. This is known as a “shutdown” and is what, I think, I experienced at the BBC.
During a cognitive meltdown, the brain tries out various explanations to situations and communication attempts that cannot be understood. Scripts or responses to different alternatives are imagined. Failure to receive clarification can lead to inaccurate assumptions which overload thought processes. The brain then shuts down and the body winds up and communication becomes impossible.
The book then alludes to what I feel is a very damaging aspect in a management context especially: the reactions or disbelief of those around the individual experiencing the meltdown. The natural reaction of others may be “learn to control it” which is usually impossible. For others, it is simply unacceptable for the individual to exhibit the extreme emotional control and behavioural response of a meltdown - but that, of course, is not how someone with AS will perceive it.
A freeze situation is where the individual is startled and unable to assess a situation. It can occur when the individual does not understand the intent of a question. If the question is vague and uses metaphors it can lead to a freeze which is a critical time for preventing a meltdown.
The answer advocated here is to seek clarification, something which I believe is correct. One of my shortcomings, which I have lately become increasingly aware of, is my reluctance to ask for help or advice when under pressure.
The reason for this is not because I am arrogant or vain, but simply because, I think, my Asperger has dictated that I do not want to feel lesser or in any way inferior.
The book then looks more closely at each of the elements of the S.A.C.R.E.D model.
Safe
Finding a safe place physically and psychologically for a person with autism is a constant struggle. Fear is often the predominant emotional state experienced.
Breaking unwritten social rules and experiencing unwritten, negative consequences are especially frustrating and can lead to feeling unsafe - or bullying and worse. Miscommunication can lead to exploitation and novel situations can become unsafe situations.
These factors obviously apply in a work context. One example is transitions which can be mental as well as in physical location. As any shifting of focus does not come easily for a person with AS, any forced transition can cause a diminished sense of security. This can unsettle established order, predictability and routine.
The book asserts that reliance on others is necessary when experiencing catastrophic reactions which reflects my experience referred to earlier of seeking assistance. However, the next point about how the post-meltdown phase also presents risks is, I feel, also pertinent.
Often an individual will feel shame and confusion after any meltdown. Certainly, with my experience, I felt conscious of the fact that I had lost a great deal of personal gravitas. If I had asked for support beforehand, or done what the authors state next – “when facing meltdown situations, feeling able to express thoughts and feelings and being open and frank with people is helpful. Trust can easily be destroyed by duplicity, hidden agendas or dishonesty” – that would, I believe, have significantly benefited me in the circumstances.
As Lipsky and Richards say, post-meltdown, support and affirmation are critical, though my preference would be to proactively work to ensure that meltdowns are avoided in the first place because of the lasting and damaging impression they can create.
Positive affirmation is especially important and reflecting on what could have been done differently should be addressed later. Being alone when under pressure may feel good for someone with AS, but it is often a poor alternative as it can mean discomfort that cannot be managed independently.
Leading on from this, is how the authors assert that, for autistic individuals, safety is not a unitary concept and that numerous safety plans are required for different situations and occurrences. I feel that this is right, though, perhaps, the solutions can only be truly acquired via experience and subsequent learning.
Calm
The authors identify how fear is the primary emotion for many autistic individuals. I have often felt this – particularly when dealing with certain individuals – when, on reflection, I haven’t been able to identify any tangible reason why! The result of fear is that negative consequences can be frequently experienced in social situations due to a lack of control and behaviour which may be misinterpreted.
The book describes how, when someone with autism worries, they have limited means of cognitively dissolving them. They may also worry about unwritten social rules, but have trouble determining what they are, meaning that social gatherings can be extremely difficult and remaining calm a challenge.
Calmness is required to process events more effectively as it is difficult to deal with information from multiple sources rapidly. Too often the information is overwhelming and, during a meltdown, information cannot be processed until after the event. Personally, if I allow my emotion to completely override, I cannot address issues objectively.
The book also alludes to how alcohol is sometimes resorted to, but how this can lead to other forms of stress, something which I believe is very dangerous in a work context.
Exercise is thought to be useful (I certainly find this to be the case) as it develops body awareness which enables the body state to be monitored and adjusted. The author also uses music via an MP3 player, something that I have thought of but yet to try.
Affirmation
Being different means that people with Asperger syndrome often do not receive the positive affirmations they require from their peers. Often it is the reverse! Though they are told they need to be more like their peers, it involves denying their core being and conforming to norms that they find either unnatural or worse. At work, this is hard.
The authors assert that being devoid of positive affirmation contributes to low self-esteem. Certainly, I feel I need affirmation or, at least, the feeling that I am doing what is expected of me and that my position is not under threat. This applies to the authors next point: namely that the support of large numbers of people is not required, but how the support of one trusted individual can make a significant difference due to unconditional acceptance, clear feedback and support. For me, this is my immediate superior.
Lipsky and Richards assert that, for adults, this is a mentor – sometimes from a chosen profession or line of work (immediate manager). It can also be someone who understands the unwritten rules of social engagement that autistic individuals find confusing. As work can be sensitive environment, one where divulging certain information– having Asperger syndrome possibly – can be problematic – having a confidant from outside is something that I have also found beneficial.
Affirmations can be very powerful when experiencing a meltdown. One benefit is if colleagues understand why they occur. To achieve this involves explaining to people why they occur and why they are difficult. When people do understand, they [meltdowns] become less of an issue internally. For me this depends on disclosure – full or partial; the problem is, this may not be appropriate in a work context.
Routine
According the authors routine for neurotypicals is often primarily social: coffee/smoke breaks, leisure activities, work project etc. The social network provides structure and safety for daily living.
A disturbance may prove unsettling for a time, but the multiplicity and support of the social network serves as a buffer against severe distress. Routine for an autistic person serves a similar function, but it is not socially based. It is narrower, more focused, individualized meaning that the social network is less able to provide required support.
Routines for someone with AS do, of course, play a major role in establishing control. During times of stress they are even more important provide an avenue for stress reduction or, perhaps, avoiding it in the first place.
I am not sure that this is always feasible or realistic. In my instance at the BBC, I was unable to withdraw into a comfort zone. The issue was imminent and needed to be resolved there and then as a deadline was pending. Looking back, what I believe I should have done is gone to my superior – the Managing Director – and said: “I’m drawing a blank and need assistance”.
Ensuring consistency does reduce anxiety. The establishment of a schedule of everyday events can be helpful in avoiding the feeling of being overwhelmed. Major tasks should be broken down into doable activities that are scheduled throughout the day or week. In a work context, I believe that these are hugely beneficial.
The 3 R’ – routine, ritual and repetition – are therefore, very important to an individual with AS when anxious, upset or distressed or are under pressure at work.
According to the book, the solution is to develop effective routines by identifying successful versions in others and then emulating them. Also of benefit is the development of scripts for different types of situation.
My own thought is that of equal benefit is disrupting established routines within ones own parameters. Whilst routines at work are essential and massively advantageous to me in pre-empting anxiety, I know that circumstances will inevitable appear when these are interrupted.
By building small changes into my routines on my own terms, I have found that subconsciously I have become better equipped at coping with sudden changes as less rigid routines are increasingly part of my daily repertoire.
Empathy
I found the “E” or empathy section a particularly informative one. The authors start by asserting how institutions such as schools and churches teach common values and social norms based around conformity.
The main motivation of NTs is to fit in and not be treated as outsiders. For people with autism, fitting in is not necessarily the problem; it is the bullying, teasing and being generally denigrated – the unwritten consequences of not fitting in – that are damaging. This only causes more mistreatment and stigmatization as an outcast.
All of these points ring increasingly true for me in a work environment. As I have progressed through my career the importance of socially mixing and establishing effective relationships with colleagues has become increasingly apparent. In fact, it has shattered the illusion that I can simply go in and do my job efficiently technically in order to survive!
In areas like conformity in dress, thought and action and the favoring of honesty over political correctness which mean that I will opt for the truth, has led me to make comments that are inappropriate because of my insufficient awareness of unwritten social conventions and codes of conduct.
All of these things can be the catalyst for a meltdown. According to the book, the key way emotions contribute to meltdowns, and how they can be prevented, is to learn about the connection that your behaviors have with your emotions and communicate that to others so that you are not misunderstood. This involves making a conscious effort to acquire an understanding of political skills, hard as though that can be. To this I would also add restraining of views related to ethics.
Develop a Plan
The solution advocated is to develop a plan which I whole heartedly concur with.
Everyone who experiences catastrophic reactions needs to have a plan for handling them in ways that do not exacerbate situations. NTs typically have unwritten plans that include contacting friends and family members for support. Autistic individuals benefit from a written plan that is communicated to first responders (managers) because their needs in times of crisis are different.
This can only be done, in my view, if one discloses ones [AS] condition. If not, the importance of developing specific strategies tailored to ones’ own needs becomes even more important. To realize this involves thinking carefully about past events and the lessons learned from them.
Catastrophic reactions are unique I believe to each individual. As the book points out, individuals differ in terms of how a meltdown is experienced and how that experience is displayed in overt behavior. Some individuals get stuck in “freeze” mode and become immobilized. Other individuals may flee to a safe place. Others may show less obvious outward signs. Individuals will also differ in their support systems.
My strategy has been to try and prevent pressure by clearing priorities or recognizing potential work-related problems early. Examples include not allowing personal antagonism to develop by seeking reconciliation immediately or clearing urgent priorities prematurely. If I do experience a meltdown I will, as seen, seek support and assistance immediately by informing my superior. The key is to recognize that each plan will be unique and dependent on many factors.
The book then provides a useful framework revolving around certain common factors:
• Identification
Identification of the facets connected with atutsim can assist with details of stressors, meltdowns and interventions. It is also important to identify the catastrophic reaction for what it is and not a psychotic break or seizure;
• Concrete
Plans needs to be descriptive and pragmatic: by being precise, evaluative/subjective assumptions can be avoided meaning that third-parties will have the benefit of clear language. Describe what a meltdown consist of using simple terms;
• Communication of the plan
Make sure people know about any plan (or personal requirements). Failure to do so means first-responders (colleagues) will not use required protocols.
• Rehearsal of interventions
It is usually insufficient to have a written plan as, during crises, people revert to conventional responses. It helps to practice interventions prior to implementing them. It also helps for the autistic individual to have scripted and practiced responses which assist first-responders (managers);
• Revising plans
Revising a plan can be a difficult undertaking as AS individuals may have difficulty with change. It is best, therefore, to start with simple, clear and well practiced strategies.
However, it is also necessary to revise plans when they do not work or are no longer sufficient as it is generally easier to add components to a plan than remove them. Plans will also evolve as individuals develop more effective coping strategies. It is important to re-evaluate a plan and modify existing strategies as conditions warrant.
The book then outlines Deborah Lipsky’s own PDP in relation to coping with meltdowns, all of which is very useful.
The next advice or guidance given is, I think, also extremely useful as it lists some of the attributes of any meltdown and the process the event works through. Understanding this process can go a long way to preventing things in the first place.
Warning signs of escalation:
• Trouble answering questions and/or stuttering;
• Sharp reduction in eye contact or focusing ability;
• Increase in intensity of physical movements;
• Complete communication shutdown: sudden halt to verbalization means conflict turns inward and the escalation process continues.
Moderate/high anxiety state means:
• Being unaware of surroundings – inability to spot danger;
• Physical fatigue from energy expended increasing motor clumsiness;
• Tendency to wander/flee from situation.
Here according to Lipsky, she comprehends next to nothing that is going on at the time. After she does de-escalate, she makes sure she is safe and seeks rectification such as by asking people questions to ensure her cognitive awareness is back.
Moderate/anxious states occur primarily due to:
• Not understanding the reason for sudden change;
• Not getting understandable answers to my questions;
• People in charge of my care not explaining the process;
• Being taken by surprise – caught off guard.
To these from a work perspective, I would add being pressured in to meeting deadlines and not being able to immediately provide or deliver.
Lipsky then states her key requirement: never leave me unattended until I have calmed down!
I am not sure that this is always applicable in a working environment. As the author then says: my plan has often been ignored by those who I gave it to whilst, at other times, implementation has been inconsistent. I suspect that this would often apply.
The author’s next point is perhaps more applicable: “we all change as we experience positive relationships and learn to trust. As others get to know and understand us, catastrophic reactions become less frequent. We learn to trust some people to be able to anticipate difficulties and to respond appropriately”. This is, I think, true. When I have worked within a company, people have gradually over time come to accept me for who I am. This removes the potential for anxiety based on inter-personal issues.
Lipsky concludes with my key assertion of how important it is that the [AS] individual takes charge and implements, monitors and revises their own plan in this area.
I am not sure that I personally would concur with the assertion that any “plan should be made available to anyone who needs to know and that it should be rehearsed with them wherever possible”, but I do feel that development of an internal plan for coping with meltdowns is essential and should be high on the list of priorities for any manager with Asperger syndrome.
My main thought having read Managing Meltdowns: Using the S.C.A.R.E.D: Calming Technique with Children and Adults with Autism is that the authors deserve tremendous credit for breeching the subject. As mentioned, I think that it is a complicate subject and a difficult one to address and its individualised nature mean that offering generic advice that is effective for everyone is extremely difficult.
However, the authors have made a first-class attempt. The book is, I feel, an excellent starting point for those who need to address the subject of meltdowns – especially in a corporate environment.
Its real benefit – for which Lipsky and Richards deserve great credit in my view – is opening the subject up for further discussion and consideration.
Managing Meltdowns: Using the S.C.A.R.E.D: Calming Technique with Children and Adults with Autism, Deborah Lipsky and Will Richards
Jessica Kingsley Publishers, ISBN: 978 – 1 – 84310 – 908 – 2
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This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies).
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Date: Sun, 12 Jun 2011 18:39:50 +0100
From: Colin REvell <[log in to unmask]>
Subject: Re: Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER NETWORKS!!!
Other links and reference points for your learning/training 'toolbox':-
Autism Risk Management -Dennis Debbaudt:- http://www.autismriskmanagement.com
Avoiding Infortunate Situations:- http://policeandautism.cjb.net
more links/videos:-
http://www.google.co.uk/#sclient=psy&hl=en&rlz=1R2SUNC_enGB398&source=hp&q=dennis+debbaudt&rlz=1R2SUNC_enGB398&aq=0&aqi=g5&aql=&oq=&pbx=1&bav=on.2,or.r_gc.r_pw.&fp=90a1c06c21d7773b&biw=1260&bih=520
http://www.google.co.uk/#hl=en&q=dennis+debbaudt&rlz=1R2SUNC_enGB398&wrapid=tlif130790021352510&um=1&ie=UTF-8&tbo=u&tbm=vid&source=og&sa=N&tab=wv&bav=on.2,or.r_gc.r_pw.&fp=90a1c06c21d7773b&biw=1260&bih=520
http://www.iancommunity.org/cs/about_asds/aspergers_syndrome_meltdowns
http://www.google.co.uk/#hl=en&pq=meltdowns%20autism&xhr=t&q=meltdowns+in+adults+with+aspergers+syndrome&cp=43&pf=p&sclient=psy&rlz=1R2SUNC_enGB398&source=hp&aq=f&aqi=&aql=&oq=meltdowns+in+adults+with+aspergers+syndrome&pbx=1&bav=on.2,or.r_gc.r_pw.&fp=90a1c06c21d7773b&biw=1260&bih=520
http://www.google.co.uk/#q=meltdowns+autism&hl=en&rlz=1R2SUNC_enGB398&prmd=ivns&ei=Iuv0TZabCcSxhQfRmrH5Bg&start=10&sa=N&bav=on.2,or.r_gc.r_pw.&fp=90a1c06c21d7773b&biw=1260&bih=520
Colin Revell
Date: Sun, 12 Jun 2011 18:28:44 +0100
From: [log in to unmask]
Subject: FW: Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER NETWORKS!!!
To: [log in to unmask]
Managing ASC's/NeuroDiversity 'Meltdowns' - PLEASE DISTRIBUTE FREELY THROUGHOUT YOUR AND PARTNER ORGANISATIONS/PUBLIC BODIES AND ALL OTHER NETWORKS!!!
With Thanks
God Bless
Colin Revell..... see below...
Managing Meltdowns
Taken from:- http://www.aspergermanagement.com/managing-meltdowns
Submitted by Malcolm on Sat, 08/29/2009 - 07:24.
When I saw Managing Meltdowns: Using the S.C.A.R.E.D: Calming Technique with Children and Adults with Autism by Deborah Lipsky and Will Richards it immediately caught my attention.
The reason being is because I feel that it is a hugely important subject – about which little specifically has been written - and, secondly, because it was I believe brave of the authors to tackle what is really a very specialist and quite narrow subject matter. It can’t, therefore, have made it an straightforward subject to write a whole book about.
I am pleased that they have however because, though the book is not that long (just 80 pages) it provides invaluable insight for all people with Asperger Syndrome (AS). In a management context, I believe it assumes even greater importance.
I have often felt anxious and under stress as a manager with AS throughout my career and, on a couple of occasions, have cognitively shut down. I have, though fortunately suffered only one true meltdown. It was whilst I was at the BBC and it was extremely disconcerting; it also created a very negative impression.
The book begins by outlining the monotropic nature of the cognitive style of those on the autistic spectrum and how narrow, deep, non-social and unconnected interests provide a degree of safety and control.
It starts by defining a Meltdown as an extreme emotional/behavioural response to stress or overstimulation, triggered by a “flight or fight” response created by heightened anxiety which causes the individual to switch to an instinctual survival mode. Though a natural human response, for an autistic person it can have highly negative consequences as it is accompanied by cognitive impairment, perceptual distortion and a narrowing of sensory experience.
Meltdowns are time limited and are caused by “sensory overloads” - an overwhelming situation, sensory or cognitive overload, novel situations or sudden change, transitions or reactions to severe stress and a shutting down of the sensory systems. This results in cognitive dysfunction, panic and the individual may become hypersensitive. Afterwards, there may be feelings of shame, remorse or even humiliation.
According to Lipsky and Richards, meltdowns are not however temper-tantrums. To the outside world however, catastrophic reactions do look extremely bad and frightening. The key, according to the authors, is understanding how an autistic person reacts to danger to de-escalate the situation by developing a form of control when an overload occurs in the brain.
When this happens the brain needs “down time” to regroup. The initial response is often to freeze cognitively which is what happened to me at the BBC. If flight is not possible, an individual may become combative. I think that this happened as well, though I became more agitated than combative.
To combat this, the authors believe autistics create predictable worlds; ones that contains routines which provide a sense of security. Script responses are developed to respond to perceived threats, but these can be problematic if the script does not match the situation. What this is saying to me is that each individual has to develop a personal strategy that can be called upon when a meltdown is pending.
S.C.A.R.E.D is what the authors believe is the solution. It stands for safe, calm, affirmation, routine, empathy and develop - securing an environment that is safe and secure. The main method of achieving this is by being alone and removing the unwanted stimulation – something that I have found to be the only ameliorative and effective action.
Calmness involves remaining in control by not processing what is happening, but talking in a strong, reassuring and literal manner. Affirmation is ensuring that others contribute positively to resolving the situation by not challenging the person further and reassuring them by name.
The maintenance of routines ensures that the individual can remain within a comfort zone until the catastrophic reaction is over. The individual can then be helped to repair any situation.
The “E” or empathy is understanding the person from their (unique) perspective by not belittling them and acknowledging their fear. Finally, developing (develop) an intervention plan can help reduce the frequency, duration, intensity and negative outcomes of any meltdown. This should be geared towards the individual’s specific requirements, (this is what I feel is the key requirement).
According to the authors, though careful planning and scripting can be helpful, they cannot prevent all meltdowns. There are some events and circumstances that are beyond control. However, planning and scripting can be extremely beneficial in decreasing the probability of meltdowns in many situations.
It is also helpful to have a back-up plan should any primary plan go off script. Scripts are very important here for autistics individuals as they help prepare for novel situations.
The book then identifies and explores the different types of meltdowns. The most familiar are the outward explosive behaviours that draw most attention, i.e. when individuals disengage or shut down and withdraw from the world around them. This is known as a “shutdown” and is what, I think, I experienced at the BBC.
During a cognitive meltdown, the brain tries out various explanations to situations and communication attempts that cannot be understood. Scripts or responses to different alternatives are imagined. Failure to receive clarification can lead to inaccurate assumptions which overload thought processes. The brain then shuts down and the body winds up and communication becomes impossible.
The book then alludes to what I feel is a very damaging aspect in a management context especially: the reactions or disbelief of those around the individual experiencing the meltdown. The natural reaction of others may be “learn to control it” which is usually impossible. For others, it is simply unacceptable for the individual to exhibit the extreme emotional control and behavioural response of a meltdown - but that, of course, is not how someone with AS will perceive it.
A freeze situation is where the individual is startled and unable to assess a situation. It can occur when the individual does not understand the intent of a question. If the question is vague and uses metaphors it can lead to a freeze which is a critical time for preventing a meltdown.
The answer advocated here is to seek clarification, something which I believe is correct. One of my shortcomings, which I have lately become increasingly aware of, is my reluctance to ask for help or advice when under pressure.
The reason for this is not because I am arrogant or vain, but simply because, I think, my Asperger has dictated that I do not want to feel lesser or in any way inferior.
The book then looks more closely at each of the elements of the S.A.C.R.E.D model.
Safe
Finding a safe place physically and psychologically for a person with autism is a constant struggle. Fear is often the predominant emotional state experienced.
Breaking unwritten social rules and experiencing unwritten, negative consequences are especially frustrating and can lead to feeling unsafe - or bullying and worse. Miscommunication can lead to exploitation and novel situations can become unsafe situations.
These factors obviously apply in a work context. One example is transitions which can be mental as well as in physical location. As any shifting of focus does not come easily for a person with AS, any forced transition can cause a diminished sense of security. This can unsettle established order, predictability and routine.
The book asserts that reliance on others is necessary when experiencing catastrophic reactions which reflects my experience referred to earlier of seeking assistance. However, the next point about how the post-meltdown phase also presents risks is, I feel, also pertinent.
Often an individual will feel shame and confusion after any meltdown. Certainly, with my experience, I felt conscious of the fact that I had lost a great deal of personal gravitas. If I had asked for support beforehand, or done what the authors state next – “when facing meltdown situations, feeling able to express thoughts and feelings and being open and frank with people is helpful. Trust can easily be destroyed by duplicity, hidden agendas or dishonesty” – that would, I believe, have significantly benefited me in the circumstances.
As Lipsky and Richards say, post-meltdown, support and affirmation are critical, though my preference would be to proactively work to ensure that meltdowns are avoided in the first place because of the lasting and damaging impression they can create.
Positive affirmation is especially important and reflecting on what could have been done differently should be addressed later. Being alone when under pressure may feel good for someone with AS, but it is often a poor alternative as it can mean discomfort that cannot be managed independently.
Leading on from this, is how the authors assert that, for autistic individuals, safety is not a unitary concept and that numerous safety plans are required for different situations and occurrences. I feel that this is right, though, perhaps, the solutions can only be truly acquired via experience and subsequent learning.
Calm
The authors identify how fear is the primary emotion for many autistic individuals. I have often felt this – particularly when dealing with certain individuals – when, on reflection, I haven’t been able to identify any tangible reason why! The result of fear is that negative consequences can be frequently experienced in social situations due to a lack of control and behaviour which may be misinterpreted.
The book describes how, when someone with autism worries, they have limited means of cognitively dissolving them. They may also worry about unwritten social rules, but have trouble determining what they are, meaning that social gatherings can be extremely difficult and remaining calm a challenge.
Calmness is required to process events more effectively as it is difficult to deal with information from multiple sources rapidly. Too often the information is overwhelming and, during a meltdown, information cannot be processed until after the event. Personally, if I allow my emotion to completely override, I cannot address issues objectively.
The book also alludes to how alcohol is sometimes resorted to, but how this can lead to other forms of stress, something which I believe is very dangerous in a work context.
Exercise is thought to be useful (I certainly find this to be the case) as it develops body awareness which enables the body state to be monitored and adjusted. The author also uses music via an MP3 player, something that I have thought of but yet to try.
Affirmation
Being different means that people with Asperger syndrome often do not receive the positive affirmations they require from their peers. Often it is the reverse! Though they are told they need to be more like their peers, it involves denying their core being and conforming to norms that they find either unnatural or worse. At work, this is hard.
The authors assert that being devoid of positive affirmation contributes to low self-esteem. Certainly, I feel I need affirmation or, at least, the feeling that I am doing what is expected of me and that my position is not under threat. This applies to the authors next point: namely that the support of large numbers of people is not required, but how the support of one trusted individual can make a significant difference due to unconditional acceptance, clear feedback and support. For me, this is my immediate superior.
Lipsky and Richards assert that, for adults, this is a mentor – sometimes from a chosen profession or line of work (immediate manager). It can also be someone who understands the unwritten rules of social engagement that autistic individuals find confusing. As work can be sensitive environment, one where divulging certain information– having Asperger syndrome possibly – can be problematic – having a confidant from outside is something that I have also found beneficial.
Affirmations can be very powerful when experiencing a meltdown. One benefit is if colleagues understand why they occur. To achieve this involves explaining to people why they occur and why they are difficult. When people do understand, they [meltdowns] become less of an issue internally. For me this depends on disclosure – full or partial; the problem is, this may not be appropriate in a work context.
Routine
According the authors routine for neurotypicals is often primarily social: coffee/smoke breaks, leisure activities, work project etc. The social network provides structure and safety for daily living.
A disturbance may prove unsettling for a time, but the multiplicity and support of the social network serves as a buffer against severe distress. Routine for an autistic person serves a similar function, but it is not socially based. It is narrower, more focused, individualized meaning that the social network is less able to provide required support.
Routines for someone with AS do, of course, play a major role in establishing control. During times of stress they are even more important provide an avenue for stress reduction or, perhaps, avoiding it in the first place.
I am not sure that this is always feasible or realistic. In my instance at the BBC, I was unable to withdraw into a comfort zone. The issue was imminent and needed to be resolved there and then as a deadline was pending. Looking back, what I believe I should have done is gone to my superior – the Managing Director – and said: “I’m drawing a blank and need assistance”.
Ensuring consistency does reduce anxiety. The establishment of a schedule of everyday events can be helpful in avoiding the feeling of being overwhelmed. Major tasks should be broken down into doable activities that are scheduled throughout the day or week. In a work context, I believe that these are hugely beneficial.
The 3 R’ – routine, ritual and repetition – are therefore, very important to an individual with AS when anxious, upset or distressed or are under pressure at work.
According to the book, the solution is to develop effective routines by identifying successful versions in others and then emulating them. Also of benefit is the development of scripts for different types of situation.
My own thought is that of equal benefit is disrupting established routines within ones own parameters. Whilst routines at work are essential and massively advantageous to me in pre-empting anxiety, I know that circumstances will inevitable appear when these are interrupted.
By building small changes into my routines on my own terms, I have found that subconsciously I have become better equipped at coping with sudden changes as less rigid routines are increasingly part of my daily repertoire.
Empathy
I found the “E” or empathy section a particularly informative one. The authors start by asserting how institutions such as schools and churches teach common values and social norms based around conformity.
The main motivation of NTs is to fit in and not be treated as outsiders. For people with autism, fitting in is not necessarily the problem; it is the bullying, teasing and being generally denigrated – the unwritten consequences of not fitting in – that are damaging. This only causes more mistreatment and stigmatization as an outcast.
All of these points ring increasingly true for me in a work environment. As I have progressed through my career the importance of socially mixing and establishing effective relationships with colleagues has become increasingly apparent. In fact, it has shattered the illusion that I can simply go in and do my job efficiently technically in order to survive!
In areas like conformity in dress, thought and action and the favoring of honesty over political correctness which mean that I will opt for the truth, has led me to make comments that are inappropriate because of my insufficient awareness of unwritten social conventions and codes of conduct.
All of these things can be the catalyst for a meltdown. According to the book, the key way emotions contribute to meltdowns, and how they can be prevented, is to learn about the connection that your behaviors have with your emotions and communicate that to others so that you are not misunderstood. This involves making a conscious effort to acquire an understanding of political skills, hard as though that can be. To this I would also add restraining of views related to ethics.
Develop a Plan
The solution advocated is to develop a plan which I whole heartedly concur with.
Everyone who experiences catastrophic reactions needs to have a plan for handling them in ways that do not exacerbate situations. NTs typically have unwritten plans that include contacting friends and family members for support. Autistic individuals benefit from a written plan that is communicated to first responders (managers) because their needs in times of crisis are different.
This can only be done, in my view, if one discloses ones [AS] condition. If not, the importance of developing specific strategies tailored to ones’ own needs becomes even more important. To realize this involves thinking carefully about past events and the lessons learned from them.
Catastrophic reactions are unique I believe to each individual. As the book points out, individuals differ in terms of how a meltdown is experienced and how that experience is displayed in overt behavior. Some individuals get stuck in “freeze” mode and become immobilized. Other individuals may flee to a safe place. Others may show less obvious outward signs. Individuals will also differ in their support systems.
My strategy has been to try and prevent pressure by clearing priorities or recognizing potential work-related problems early. Examples include not allowing personal antagonism to develop by seeking reconciliation immediately or clearing urgent priorities prematurely. If I do experience a meltdown I will, as seen, seek support and assistance immediately by informing my superior. The key is to recognize that each plan will be unique and dependent on many factors.
The book then provides a useful framework revolving around certain common factors:
• Identification
Identification of the facets connected with atutsim can assist with details of stressors, meltdowns and interventions. It is also important to identify the catastrophic reaction for what it is and not a psychotic break or seizure;
• Concrete
Plans needs to be descriptive and pragmatic: by being precise, evaluative/subjective assumptions can be avoided meaning that third-parties will have the benefit of clear language. Describe what a meltdown consist of using simple terms;
• Communication of the plan
Make sure people know about any plan (or personal requirements). Failure to do so means first-responders (colleagues) will not use required protocols.
• Rehearsal of interventions
It is usually insufficient to have a written plan as, during crises, people revert to conventional responses. It helps to practice interventions prior to implementing them. It also helps for the autistic individual to have scripted and practiced responses which assist first-responders (managers);
• Revising plans
Revising a plan can be a difficult undertaking as AS individuals may have difficulty with change. It is best, therefore, to start with simple, clear and well practiced strategies.
However, it is also necessary to revise plans when they do not work or are no longer sufficient as it is generally easier to add components to a plan than remove them. Plans will also evolve as individuals develop more effective coping strategies. It is important to re-evaluate a plan and modify existing strategies as conditions warrant.
The book then outlines Deborah Lipsky’s own PDP in relation to coping with meltdowns, all of which is very useful.
The next advice or guidance given is, I think, also extremely useful as it lists some of the attributes of any meltdown and the process the event works through. Understanding this process can go a long way to preventing things in the first place.
Warning signs of escalation:
• Trouble answering questions and/or stuttering;
• Sharp reduction in eye contact or focusing ability;
• Increase in intensity of physical movements;
• Complete communication shutdown: sudden halt to verbalization means conflict turns inward and the escalation process continues.
Moderate/high anxiety state means:
• Being unaware of surroundings – inability to spot danger;
• Physical fatigue from energy expended increasing motor clumsiness;
• Tendency to wander/flee from situation.
Here according to Lipsky, she comprehends next to nothing that is going on at the time. After she does de-escalate, she makes sure she is safe and seeks rectification such as by asking people questions to ensure her cognitive awareness is back.
Moderate/anxious states occur primarily due to:
• Not understanding the reason for sudden change;
• Not getting understandable answers to my questions;
• People in charge of my care not explaining the process;
• Being taken by surprise – caught off guard.
To these from a work perspective, I would add being pressured in to meeting deadlines and not being able to immediately provide or deliver.
Lipsky then states her key requirement: never leave me unattended until I have calmed down!
I am not sure that this is always applicable in a working environment. As the author then says: my plan has often been ignored by those who I gave it to whilst, at other times, implementation has been inconsistent. I suspect that this would often apply.
The author’s next point is perhaps more applicable: “we all change as we experience positive relationships and learn to trust. As others get to know and understand us, catastrophic reactions become less frequent. We learn to trust some people to be able to anticipate difficulties and to respond appropriately”. This is, I think, true. When I have worked within a company, people have gradually over time come to accept me for who I am. This removes the potential for anxiety based on inter-personal issues.
Lipsky concludes with my key assertion of how important it is that the [AS] individual takes charge and implements, monitors and revises their own plan in this area.
I am not sure that I personally would concur with the assertion that any “plan should be made available to anyone who needs to know and that it should be rehearsed with them wherever possible”, but I do feel that development of an internal plan for coping with meltdowns is essential and should be high on the list of priorities for any manager with Asperger syndrome.
My main thought having read Managing Meltdowns: Using the S.C.A.R.E.D: Calming Technique with Children and Adults with Autism is that the authors deserve tremendous credit for breeching the subject. As mentioned, I think that it is a complicate subject and a difficult one to address and its individualised nature mean that offering generic advice that is effective for everyone is extremely difficult.
However, the authors have made a first-class attempt. The book is, I feel, an excellent starting point for those who need to address the subject of meltdowns – especially in a corporate environment.
Its real benefit – for which Lipsky and Richards deserve great credit in my view – is opening the subject up for further discussion and consideration.
Managing Meltdowns: Using the S.C.A.R.E.D: Calming Technique with Children and Adults with Autism, Deborah Lipsky and Will Richards
Jessica Kingsley Publishers, ISBN: 978 – 1 – 84310 – 908 – 2
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