Sunday, 25 March 2012

Autistic Obsessions and Rituals - AUTISM NI warns of the dangers!

WARNING

Do you have a child/loved one who has a diagnosis of autism? Do you have autism yourself? If you go to Autism NI (Northern Ireland's Autism Charity) you will find a very interesting 'fact' sheet which you should read before it's too late!

see:    "Obsessive and Ritualistic Behaviours in Individuals with ASD"

For everyone else, I suggest you upgrade your home security, set evening curfews for your children, and install 'autistics' detection devices throughout your home and in your children's school bags to avoid the very scary prospect of bumping into one of these pornography loving, weapon obsessed pyromaniacs. If your children go to school with children who have even a whiff of autism, beware and never ever let your own child be in their company alone (unless of course your child wishes to join the military and already has interests in the above noted activities.) Keep autistic and non-autistic siblings apart and refrain from leaving your children who have autism alone with your elderly relatives.

I don't want to worry you, but if this 'fact' sheet is correct, and your child has a diagnosis of autism s/he is a potential: sexual predator, murderer, arsonist. (and any other scary descriptive noun you can think of)
Perhaps MI5 and the CIA should be included as part of the multi-disciplinary team during the diagnostic process. This is just too SCARY!

What is holding up the gene research on autism? The sooner we find a test to detect autism in the womb, the sooner we can rid this world of these monsters via abortion!

See below for Autism NI's  frightening array of what could be in store for you and/or your child with autism:

(emphasis mine - the grammar mistakes are those of AutismNI)











Negative aspects of obsessive /ritualistic behaviour

"Parents/carers may have to try and reduce the inexhaustible compulsion to fuel the interest. This could be achieved by limiting the time spent by setting a clock, time timer or schedule.

The special interest can be expensive to maintain and the individual can feel compelled to spend money on it or steal to satisfy the compulsion.




If the individual’s special interest is potentially harmful to themselves or others then steps have to be taken to stop or modify the interest.
However this may prove to be particularly difficult and the individual, parent or carer may require professional support.       (**This is classic! Problem creation and problem solution! see below)
If an obsession is potentially dangerous, observe the individual to see if it is the whole activity or only an aspect of it that is compulsive. e.g. a child obsessed with lighters may not need to keep lighting them but may like the noise, sensations and spark rather than the flame that goes with flicking the lighter. Therefore empty lighters may be safer. If behaviour is potentially harmful always seek professional advice.

(sound advice if I ever heard it!)
Parents and carers need to be aware and alert to morbid or macabre interests. (weapons, pornography, fire etc.)                                   

There needs to be further investigated and an explanation of legislation to the individual as they will be unaware of the dangers they face. Professional help should be sought as the intensity and dominance of the obsession will be hard to control."



Never forget, it's depressing having a child who has a diagnosis of autism and potentially the life ahead of you with this child could be hell.  You can't do this on your own, you need 'support' from 'professionals' and organisations like Autism NI. It's highly likely that you will not be able to change things like 'ritualistic' behaviours and all you can do is just go with the flow and refrain from keeping guns and lighters in the house.  No, we don't provide help, we are just telling you in our own impersonal way, what we think your child's future might look like so we can  scare the pants off of you and encourage you to join one of our support groups where you will receive unending tea and sympathy.

We don't need to provide evidence for what we say (we usually don't) and we certainly do not need to worry about being politically correct. The parents who join our organisation have other things to worry about, and we have  done our best, for the last 20 years, to ensure their time is spent raising funds for us so they don't have to worry about their children.

See here for our official Facebook page where you will find all you need to know about opportunities to raise funds for us. We have scores of staff wages to pay every month and we need YOUR help to ensure their mortgages are paid. If you want links to research or support or services in Northern Ireland for you and  your family, well, we suggest you go elsewhere. What do you think we are, a charity?

To Autism NI:   Does cramming parents into drafty halls, and repeating the same mantra over and over about having passed a redundant autism bill count as obsessive or ritualistic behaviour?


**There is a pill for that! Autism NI has developed a  relationship with one of the biggest 'pill' makers  Glaxo Smithkline. In 2008, Autism NI was awarded £30,000 for the IMPACT Award from Glaxo Smithkline in partnership with the King's Fund. see here .

More recently, in their 'What People Say about Us' page, here , Katie Pinnock, GSK Director of Corporate UK Contributions says, "This charity has done an amazing job of supporting families of those with Autism, and informing health professionals about treatment. It is to be commended for its work in helping to reduce the isolation and stress that is often caused as the result of the condition. "

"We all know that autism has had a huge impact on the psychopharm industry", so the name of the award was fitting. "Sales of atypical antipsychotics went from $0 to $16 billion a year since the start of the (autism) epidemic." see here .

(By the way Katie, isolation is not caused by autism, the isolation is a social construct created largely by the kind of ignorance displayed in the content of Autism NI's fact sheet above.) Further, it is very worrying if Autism NI has, as you say, been informing health professionals about treatment. Based on the the content noted above in this blog entry, and together with Autism NI's relationship with your company, I infer that professionals are being informed that people who have autism are sociopaths and ultimately, with the help of 'professionals' become  fodder for drug testing. Some treatment!


Let's remember that Glaxo Smithkline is the producer of many drugs including Paxil (Seroxat) prescribed for OCD and depression. Glaxo is/was embroiled in multi million dollar lawsuits regarding this drug and others and its failure to divulge the damaging impact of the drug on children . Children don't have to physically take this drug or others to be affected. Their pregnant mothers who have been prescribed SSRIs  like Seroxat can pass on the negative effects to their foetus.  Use of Paxil/Seroxat and other anti-depressant use during pregnancy has been linked to higher rates of autism. See here .


Why would an Autism Charity link itself or accept commendations from a large pharmaceutical company, particularly Glaxo Smithkline, the producer of SSRI's, vaccinations, etc that are of such contention within the worldwide autism community.

Over to you parents.



Friday, 23 March 2012

Southern Health Trust - Preferential Treatment to Autism NI Charity?

Update 26 March 2012 

The SHSCT referred to in this blog entry has been amended. SHSCT has removed the link to Autism NI and replaced it with
http://www.familysupportni.gov.uk/

The link to the webpage regarding Autism Services in the Southern Trust area is:  http://www.southerntrust.hscni.net/services/1965.htm .






On perusing the SHSCT (Southern Health and Social Care Trust) website,  I came across their 'autism specialist intervention service' page. It all looked interesting. I read the whole page but when I came to the end of the page, I noticed that this Trust provides only one external weblink  regarding autism. That link is to the organisation 'AutismNI'.

I would like to say to the other 9 or more voluntaries and charities in Northern Ireland that work with autism related issues,  please contact the Southern Trust and advise them of their oversight. You are not receiving equitable publicity.

Why are children and families in the Southern Area being formally advised via an official Health Trust website, to go to just ONE charity. Out of all the links in the world, why is AutismNI the only external link on the page?

If you live in the following areas, you are in the Southern Area Trust:
Armagh, Banbridge, Craigavon, Dungannon, Newry & Mourne.


AutismNI is a company. Its sells many of its services, it requires that 'members' pay a membership fee, it also has a need to feed itself and this is done via membership fees, fundraising by families, etc. How much money would AutismNI receive from the hundreds of potential families being fed to it via this website? Who made the decision in the Southern Trust to give preferential treatment to this organisation? AutismNI had £400,000 (approx) in its coffers last year. Why were they selected by the Southern Trust as the only voluntary organisation to have its link on their website regarding autism? Was it because they are the 'richest' and by implication, the best?  (AutismNI touts its 20 year history as something to celebrate.
20 years of ineptitude, incalcitrance, mediocrity? )

The real question is what is AutismNI offering anyone in the Southern Area Trust? If you refer to AutismNI's own website they have minimal if any training going on, none of which is in the Southern area. Most of their 'training' you have to pay for and it looks like Trusts in general, are no longer funding the organisation, preferring their own in-house trainers and services.  A cursory look at the AutismNI website indicates not much is happening with this organisation at all except fundraising and hiring more fundraisers! 

It's all smoke and mirrors. If you live in the Southern Trust area and you have a newly diagnosed child where do you turn for help then? What information and support do you need?

SEN and Statementing help
DLA/carer's assessments advice
Access to the latest autism intervention strategies
Advice on schools
Diet/Nutrition/Health advice
Socialisation/Play/Communication opportunities?
Parent training in advocacy, understanding the Health and Education Systems?
Understanding the Implication of the SEN (Special Educational Needs) Review and what to do about it?

If you are a family requiring help with the above list, there are organisations all over Northern Ireland working in different areas providing help in these matters. Some of them are :

PEAT (Parent Educators as Autism Therapists)
ANNI  (Autism Network NI)
NAS  (National Autistic Society)
PRAXIS
Autism Initiatives
MENCAP
Barnardos (Forward Steps Programs)
Contact a Family
SENAC
Children's Law Centre


If you organise a charity, working with persons who have autism in the Southern Trust, you will now know why families, new to the diagnosis of autism, are not contacting you, they are potentially contacting only AutismNI because that is the only organisation that is being given publicity by the Trust's autism service. Shocking and totally unethical.

Nice cosy relationship between the Trust and Autism NI?  Quid pro quo relationship? What benefits are being enjoyed by each party in this twosome?

(by the way, Southern Trust, the webpage in question does not divulge the name or contact details of the Autism Coordinator for the area) These details should be on the website. I also note, that typing in 'autism' into the search facility of the main website page comes up with nothing. So, all in all, at least in my opinion, I find the 'autism specialist invervention service' page wanting and needing a complete overhaul.

For anyone who lives in the Southern Trust area, your Autism Coordinator is:

Lesley Waugh
Autism Spectrum Disorder (ASD) Co-Ordinator (Southern Trust)
11-17 Russell Drive, Lurgan
BT66 8HD
028 3831 2801
mailto:lesley.waugh@southerntrust.hscni.net

Contact Lesley if you, as a parent/carer are not happy with the service or provision your child is receiving from the Health Trust (eg. waiting times, SLT/OT/Carer's Assessments, Social Workers, etc)

 Lesley Waugh is the overall co-ordinator for autism services and provision in this area and is there to iron out your problems.



Tuesday, 6 March 2012

"PASSIVE NI” New autism group in Northern Ireland seeking members

PASSIVE NI (Parents of 'Autistics' Sitting Still Inviting Vulgar Exploitation) convened it's first official meeting yesterday. Two parents, together with five children attended the meeting where tea and home-made biscuits were provided for a nominal charge.


Leavitt Twomey, a parent and social worker, hosted the inaugural meeting of the group in his Lisburn home. As chairman of the new group he hoped the membership would grow to raise enough money to pay for tea and biscuits for the entire year! “We already have 12 members including myself, my extended family and our treasurer. We hope to have many more soon. We count everyone as a member, so even if your child is 3 years old, he or she will be a member, we won't exclude anyone. (as long as they pay their membership fee)

If every parent and child in Northern Ireland who are affected by autism joined our group, including their grandparents and friends we would have tens of thousands of members! To that end, we have already printed 5000 membership forms for PASSIVE NI. It only costs £20.00 to join (£25. 00 for children under the age of 16 and unemployed/senior citizens)."


Leavitt brought the group's attention to the 'no paper' policy of the meetings and in the interest of the environment, no printed paper of any kind, including research papers, or printed information from other agencies or groups will be permitted or circulated. He said the only exception would be PASSIVE NI's membership application forms, sponsor sheets for the group's upcoming bungee jump and of course, kleenex tissues. 


“Mostly what parents want”, Leavitt said, “is for someone to listen to them. I am a social worker, so I know how the system works. Parents don't need to concern themselves with things they know nothing about. Further, our group is not about research or learning. We are here to cry on each others shoulders if we have to. Parents are happy to let others advocate for their children's future as long as they have someone to listen to them in the meantime. This is how it's always worked in Northern Ireland regarding autism and we have no desire to change that.”

PASSIVE NI knows that parents whose children have autism spend much of their time and energy caring for their children. “We know that time is precious to parents and that's why we have an array of fund-raising activities planned for parents that will take their minds off of autism. Parents will do anything to help their children. Fund-raising for PASSIVE NI is a great way for parents and their children to come together socially and to meet new people.


Fund-raising for PASSIVE NI will pay for tea and biscuits, Leavitt said, but he also hopes to employ two part-time professional fund-raisers very soon. Leavitt also hopes to quit his job as a social worker so he can work full time for PASSIVE. “We know that public awareness about autism is growing and we know how generous people in Northern Ireland can be when it comes to giving. I hope we will be able to raise enough money to pay for my full-time salary in the next six months! We are 'ambitious about autism!'


Albion Yurtale is a parent of two children, both of whom have autism. He is an accountant and is also the group's treasurer. He echoes Leavitt's optimism about the future of PASSIVE NI. “We are in the process of establishing new groups all over Northern Ireland. It will be my job to visit each of these groups and set up their accounting systems. Each of the groups will be required to carry out their own fund-raising. A stipend (85%) of all monies each group raises will be required to be given to PASSIVE NI's head office at Leavitt's home. The rest can be used by each group to carry out further fund-raising and to pay for tea, biscuits and tissues.

“Anyone who wishes to get involved with PASSIVE NI or who would like to start their own branch  is welcome to contact me at our premium telephone number :

0905 678910*
(* calls to the above number charged at £2.50 per minute. Mobile rates may vary. Please check with your provider)



PASSIVE NI
A shoulder to cry on


Thursday, 1 March 2012

Autism Without Treatment

Below is a Youtube Video entitled Autism Without Treatment.

The content is self evident and disturbing. The language used in the video is not politically correct, (though that's the least of which is shocking about it).
It was created from footage in the 1960's.

Today, in Northern Ireland there are still people who have autism  who have lived most of their adult lives in "mental" hospitals.

Adults who suspect they have autism in Northern Ireland face an exceptionally long and protracted process to receive a diagnosis, much less help or understanding. They are often pigeon-holed into learning disability and/or mental health services, their autism misunderstood and ignored.







Saturday, 15 October 2011

Exploitation of Parents (Autism)

I would like to let you know about a great article tackling the exploitation of parents whose children have autism. The article has an American author but the issues are universal.

The link to the article below is here  and I think it's a must read for every parent, particularly parents who are new to the diagnosis of autism. Very few parents will not have succumbed to the feelings and anxieties illustrated below and I think it's a safe bet that denial of the illustrated emotions is common.  I have noted in red those points that are of particular relevance to recently discussed issues in this blog. Using ABA to examine the behaviours of ABA consultants and parents alike would be an interesting study - any takers?

EXPLOITATION: BEWARE OF THE PARENT'S TRAP

Exploitation is the taking advantage of parents who are vulnerable and willing to do whatever it takes to "cure" their children who have autism, Asperger's syndrome or other special needs.

What makes parents vulnerable to being exploited?

When parents are often in shock and denial about their child's disorder and delays, they can lapse into magical and fantasy thinking and seek a cure or "silver bullet" to make their children "normal." This makes them very vulnerable to offers of help from professionals who claim to have the magical touch, or miracle cure to help make their children better, cured or healed. These parents are unfortunately often willing to pay whatever it takes to get the magical cure to make all things right for their child.

What do vulnerable parents look like?

Vulnerable parents may engage in a number of the following activities:

Spend whatever it takes

There is a willingness to spend whatever it takes to get the "best" treatments, doctors, therapists, programs, schools etc to "fix" or "cure" their child.

Doctor shopping

Looking for just the right doctor, therapist, teacher, program which will make things better for their child.

Blame the doctor

Fighting with the child's treating professionals because the child is not progressing at the rate which the parents had hoped the child would progress given the "hope and promises" provided by the professional or program.

Doctor buying

Offering professionals, with "good reputations," sums of money, goods, services etc which will entice the professional to get involved with their child.

Shoot the doctor

Walking away from the "messenger bearing" professionals who give the "bad news" concerning the developmental disorder because it is "too much" to emotionally absorb and seeking out professionals who will have more "positive" or "optimistic news" to give them about their child.

Guilt-induced hyperactivity

Getting so absorbed in the "treatment" of their child that they have little or no personal time, for fear that their child will not progress or regress if they do not dedicate themselves 150% to the curing and healing of their child.

What does exploitation look like?

Parents who are being exploited often experience one or more of the following behaviors from the professionals who are treating their children.

Dual relationship with parents

Professionals are in many states legally and in all cases ethically not supposed to personally benefit financially or business wise from involvement with the parents of children who are or have been under their professional care. Examples of this could include parents giving money, over and above the professional fees being charged to provide the services to the child, directly to the professional or indirectly by paying a third party associate of the professional. This third party could either be related to or involved in a business dealings with the professional. Parents might lend money to the professional or enter into a business relationship or partnership with a professional or a professional's associate, such as buying a house or car from the professional, opening a new company or business with the professional.

The Golden bullet promises

This mean that the professional presents parents with false, deceptive, or misleading advertising and promises that their specialized treatment is the "Key" to a cure for their children. In many states this is illegal and in all cases it is unethical. A sample state statute for Licensed Psychologists in Florida states: 64B19-17.002(d) False, deceptive, or misleading advertising or obtaining a fee or other thing of value upon the licensee's representation that beneficial results from any treatment will be guaranteed.

Inordinate lifestyle change

This means that parents being encouraged to make radical changes in their current family life so that child can receive the services of the professional. This could involve the family being uprooted and moved to where the "desired" professional or program is located, or taking on second jobs or loans to afford the services of the "desired" professional or program. It could also involve a professional encouraging a family to completely disrupt their normal family cycle or routine to meet the inordinate number of hours of intervention dictated by the "desired" professional or program.

Guilt letting of parents

This means the professional plays on the guilt of the parents to manipulate the parent to go to "extraordinary efforts" to "fix" their child. This is illegal in many countries and is unethical in all cases. It involves inappropriate representation of the "power" of the treatment being offered the child. Hints of this include making the parents think and feel that no matter what they do for their child is "never good enough," "done well enough," or "sophisticated enough" to "fix" the child. A professional may suggest that parents can never spend "too much money," "too much time," or "too many personal or physical resources" on their child in order to "fix" the child, or convince the parents that only this one particular professional or program is "right" of their child and that they would be doing irreparable harm to their child if they changed professional or program for their child.

Blaming the parents

This means the professional blames the parents, if the child is not making substantial developmental progress. The professional does not appropriately inform the parent that each child is different (principle of individual differences) and that there is no predictable pattern to expect in the progress a child will make as a result of being involved in the therapeutic process.
It might involve embarrassing and humiliating parents verbally and non-verbally by blaming them for the fact that their child is not progressing or changing quick enough or substantially enough. The message given in this case is that "of course it is not the fault of treatment offered by the professional" but rather the lack of extensive follow through on the part of the parent that explains the lack of progress. REALITY is - due to individual differences, the child is not be progressing. This might be due to being on a developmental plateau or because the prescribed treatment does not work with this child like it does with others.

Gouging the parents

This means the professional charges exorbitant fees for services and treatments. These fees are typically not customary or ordinary in the professional's respective professional field. It could involve taking advantage of the shortage of trained professionals or shortage of the desired medication or treatment in a community and therefore charging sometimes-double, triple and in few cases eight times as much as what the service or treatment would ordinarily cost.

What do you do, if you think you are being exploited?

If you feel you are being exploited by any of the professionals involved in working with your child, first confront the professional and ask for such exploitation to cease. Second: if the professional continues to be exploitive then contact the professional's respective professional association or state licensing or certifying board and file a complaint.

Principles of Ethics for Medical, Therapeutic and Developmental Specialists Who Work with Children with Special Needs

Professionals serving children with communications and learning disorders will embrace the children’s welfare as their primary professional responsibility. Professionals will respond promptly and expertly, without prejudice or partiality to the needs of these children and their families.
Professionals will respect the rights and strive to protect the best interest of these children whose parents are vulnerable due to their emotional state of shock, loss, and grief and as such often have a diminished decision making capacity and thus are impeded in making appropriate treatment choices.
Professionals will communicate truthfully with parents and secure their informed consent for treatment. They will protect families’ privacy and disclose confidential information only with consent of the parents when required by an overriding duty to protect others or to obey the law.
Professionals will deal fairly and honestly with colleagues and take appropriate action to protect these children and their families from health care and developmental interventionists who are impaired, incompetent, or who engage in fraud or deception.
Professionals will work cooperatively with others who care for these children and their families and also advocate on behalf of these children and their parents with any third party payer (insurance company, HMO, state agency, or school system) to insure that all appropriate and needed therapies, treatments, and programming are provided and reimbursed.
Professionals will engage in continuing study to maintain the knowledge and skills necessary to provide high quality care for children with communication and learning disorders and their families, and act as responsible stewards of the health and developmental care resources entrusted to them.
Professionals will support societal efforts to improve public health and safety, reduce the effects of developmental communication and learning disorders, and secure access to appropriate early intervention and other treatment services for children with communications and learning disorders no matter how severe or minor their disorders may be.

closing thoughts

Dr. Mark Rosenbloom the founder and President of the Unicorn Children's Foundation, at the November 1998 ICDL Conference, gave a heart rendering plea for the end and prevention of the exploitation of parents of children with communication and learning disorders. Dr Rosenbloom shared with the audience the following Physician's Prayer that eloquently emphasizes the type of spirit and attitude, which parents ought to be able to expect of the professionals who are involved in working with their children.

The physician's prayer

Supreme God in heaven — Before I begin my holy work to heal the human beings whom Your hands formed. I pour out my entreaty before Your throne of glory, that You grant me the strength of spirit and great courage to do my work faithfully, and that the ambitions to amass riches or goodness shall not blind my eyes from seeing rightly. Give me the merit to regard every suffering person who comes to ask my advice as a human being, without any distinction between rich and poor, friend and foe, good person and bad. When a person is in distress show me only the human being. If physicians with greater understanding, give me the desire to learn from them, because there is no limit to the learning of medicine. But when fools insult me, I pray: Let my love of the profession strengthen my spirit without any regard for the advanced age of the scorners and their prestige. Let the truth alone be a lamp to my feet for every yielding in my profession can lead to perdition or illness for a human being whom your hands formed. I pray You, compassionate and gracious Lord, strengthen and fortify me in body and soul, and implant an intact spirit within me.
From the writings of Rabbi Moshe ben Maimon
Coping.org is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D., Email: jjmess@tampabay.rr.com ©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D. Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.

The author of the website goes on to explain why the website was developed:

This site was developed by an Australian social worker as he was concerned that many autism and Asperger's syndrome associations were opting to sell their information instead of providing it freely. The philosophy of this website is that most parents are struggling financially to pay for interventions, and information from 'support services' should not be charging for their support, even if their government funding is marginal.





Although there are many websites dealing with Autism Spectrum Disorders, there are few that have developed a comprehensive range of free fact sheets to provide practical information and strategies, both for people with autism or Asperger syndrome, and their families, carers, teachers, employers and the wider community. (http://www.autism-help.org/forums-links-autistic-spectrum.htm)