asplanet.info
| Advisory group - independent voice - building bridges - Autism is not a dirty word! |
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| Written by AsPlanet.info - Advisory Autism members - UPDATED April 2010 | |||||||||||||||||||
| Apr 24, 2008 at 07:17 AM | |||||||||||||||||||
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Sometimes it feels like my wings have been clipped, but like a double edge, one part desperate to be heard and the other fighting the tide or ignorance.!!! . We all need to be the change we want to be and I so agree Dave http://www.disabilityartsonline.org.uk/?location_id=6&offset=0&item=562&itemoffset=1 We can let society disable us or take control, personally I have had enough of false promises, time to remind the world we do not need normality training, we simply are and can do... As personally I have had enough of false promises, we are not a policy to be thought about but real individuals, we should not be funded because we have to be, we are apart of society and always have been, nothing should be said or done without us,our lives and we all need to speak out and say.The stigma attached to many of us we may as wear labels around our necks, of course we are not labels. Labels are simply for the professionals trying to figure and often still getting it wrong, no majority has a right to control what they often have no cue about. Everyone of us a unique individual on this planet, but at times I feel it would be easier being an alien, maybe I should write society a clear list of instructions on how to treat diversity and difference, because some simply do not seem to have any idea. . Quote: Read, every day, something no one else is reading. Think, every day, something no one else is thinking. Do, every day, something no one else would be silly enough to do. It is bad for the mind to be always part of unanimity. - Christopher Morley. I can totally relate to this, as I have never been in the inner circle anyway, always hanging off the edge. . To me there is no "normal" as such, everyone is different... and guess those that surround us at any one given time are the majority, so strange in my book is the majority, so therefore the "norm". I think we need to be aware of, is that our own social normality, may not be the next persons idea or fit, so unless we all want to be conformed to a stereo type of someone else's choice, type "card broad cut out" maybe we all need to step outside of our own safe zones from time to time, outside the confines of individual self - as I have no choice but too be differently uniquely me. . . Life is not meant to be a constant struggle just to live it on other individuals terms: LET – our Lives, our Existence, our Terms! - Alyson Bradley (Oct.09) . . It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power. ~ Alan Cohen . . Spectrum individuals need to be encouraged to talk, be embraced and allowed to be for who they are, not isolated. We all need to celebrate diversity and difference not stress over it, as with understanding comes awareness, comes acceptance… Time to break down barriors, the tyranny the silence, not only to talk, but to shout, to raise awareness.One of the biggest problems I feel it seems that many in society do not seem to want to listen or care in regards what its really like for those on the autism spectrum, individuals being defensive, offended by what they often do not even understand, I so wish at least they would try, as personally I am so fed up with treading on eggshells! . . . What choice do we have but speak out Live a controlled life or truly be self, be free! . AUTISM AWARENESS has to be "nothing about us without us" as the diagnostic criteria changes it may change the way we describe, think about, measure the autism spectrum disorders, so more than ever we all need to work together. ASD individuals are real people and it's about time the life and sanity of vulnerable people have long overdue support, allowed and recognized "We do have emotions, everyone does some of us just more misread than others!" - Ignorance can no longer be an excuse! by Alyson Bradley who is autistic - what's wrong with that, just a word! (April 2009) . “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest walls of oppression and resistance.” - Robert F. KennedyCapetown, June 6th 1966 . . For many still no support and what is a pile of policies to restrict, one day every difference and diversity will be embraced, allow and accepted but until then it looks like many of us will have to continue to fight our own battles, together. The real problem there needs to be so much more inclusion from those of us with varied lived experiences, otherwise errors to some, will continue to be denied quality of life for many - we are not tick boxes! (July 2009) .The “tool box” as many call it a way of controlling a misunderstood differences to me... I am in control of my life and no "tool box" now I have discovered Aspergers and my other neurological differences will I allow to conform me into an alien (NT) stereo type.. and act in a world I have a right to live in, enough of being that cardbroad cut out clone.!. . . DAA - Disability Awareness in Action Dr. Stephen Shore's Future of Autism Presentation http://www.youtube.com/watch?v=iqkjqiFBMnQ . ASAN (The National Autistic self advocacy Network) http://www.autistic advocacy. org .Autism Spectrum Disorder NZ work program: For updates and download, request on the NZ ASD Guidelines see link below:
Yyou can also add your views cooments on AsPlanet forum, as I am on the NZ ASD Guideline group and will make sure appropriate views are taken into account / heard: http://asplanet.info/forum/index.php?topic=661.msg2796#msg2796 . . The All-Party Parliamentary Group on Autism - June 2009 Transition into adulthood - well written and raises some great points: |
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My view on this:
"Many ASD young adults I feel are the age that really need to be targeted, as a young adult I was in a similar situation and being wrongly judged did not help, in fact just made me worst, more paranoid, isolated and at odds with the world at the time. Young adults need help and support, and it upsets me that many in society continue to close the door on these people as it's often society that creates the problem by not understanding many ASD individuals in the first place!...
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ASD individuals are often already rejected and confused individuals and really often just want to be heard, someone to understand and listen to them, their frustration and anger often comes from society not listening or understanding, a councilor of worst or another ASD individual who would understand from their point of view, would of been so much more appropriate than a police cell which could in fact escalate the problem long term.."
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Another comment sent to me and permission to publish:
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http://www.canta.co.nz/opinion/mental-illness/comment-page-1/#comment-342
on the subjects and for many to have a voice that often are not heard, we do have free
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Attitudes in regards to ASD need to change - thoughts!
"I do feel in regards to autism that society in general unfortunately has not embraced or recognized the bigger picture of the autism spectrum and until the whole school systems, society etc... starts to change those of us more neurologically different will always be slightly at odds with the world.
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ASD parents often criticize us because we do not like the word fix / cure, as find unnecessary, and I do. I understanding parents wanting the best for their children, don't we all, but the battle should not be between asd parents and individuals, it should be with the governments. I do feel there has to be a middle ground for real change as we all want the same thing to have our children as individuals be accepted, and will only fit in if society attitude starts to change, starts to embrace, raise awareness and understanding for all.
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I feel none asd parents realize many of their children like ourselves may change and adapt, we all do to a point however we are treated, what fad treatment is forced upon us.... but they also need to know without real understanding and acceptance many of us will stay lost, I feel it's about time everyone embraced the asd community and allowed us our differences.
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Of course I realize those on the autism spectrum with additional medical issues should be dealt with just like for people not on the autism spectrum, but we also need to remember and allow individualism, change does happen if we do not stay true to ourselves, when I was younger people were being institutionalized, now they are beginning to be understood. Progress does not happen overnight, but believe you me I tried to be what I was not for nearly fifty years, I played the part and well, but I always knew deep down some think was missing, the difference of finding, allowing and accepting my autism core / heart, allowing the person I was born to be come back, has been one of my main joys in life.
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As many of you know I have 2 children, one being on the autism spectrum so I also know as a parent what it's like and for the next generations sake, I feel we all need to move forward together whatever our differing views, as we all want what's best for the next generation. Yes of course we can adapt and change, on the outside but inside I was always lost until I found Aspergers. No one can be what they were not born to be, and should not have to be, you would not insist I change the color of my skin to fit in, that use to happen to many and hopefully as with autism one day I will be accepted and allowed."
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Recent discussion on AsPlanet Forum Feb. 09
join us on forum or comment at bottom of screen
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"I so agree, when I was diagnosed not so long ago no one seemed to want to know, care or understand, me being an adult. Everything seems to be mainly based around children... so my search for answers has become my own journey like many, but thankfully the aspie/autie community have made me feel at home and at least I have a sense of belonging now.
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The hardest things I find is the attitude of others:who seem to want to help me be like them! If you have latest this long why do you need help now, the damage, isolation and after finding self no one hardly seems to understand or want too most of the time, I could listen to a none autistic telling me how to act like them, is no support to me. It has been suggested I medicate - why! so I am more like everyone else, it amuses me others feel a need to want me to conform / fix me.
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Some even see it as a problem that I am happy to have aspergers, my autism core/heart is just a part of who I am long with many of my other differences... if you want to help, at first you truly need to and want to understand. Bit by bit I hope to help instigate change, so was very happy to hear about the "autism bill" a step in the right direction, as some countries there is still very little support, so feel it's vital the UK and others take a lead role and hopefully the others will follow, autism is a global issue, just like any difference, but sadly feel it's a long path before others truly unite and understand around the globe."
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Alison Singer announces resignation as executive vice president of
http://asplanet.info/index.php?option=com_content&task=view&id=104&Itemid=149.
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Update - Nov.09 group name changed from Action to advisory - the action group stopped for a while as many of our members gave 100% to ensuring the first ever large autism fun run event happen in NZ, which went ahead and was better than any of us could of hoped for. Since then due to recent discrimination against myself some members have advised me to start up a small group, more of an advisory group, so if action needed we can take as a group...
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Advisory Autism Group - the independent voice was originally set up as realized there was a group of people on and off the autism spectrum who want to help raise awareness and understanding, I have also found a need to help support undiagnosed adults, and happy to do so and help them discover and value who they are.
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The idea of the group is so that likeminded people can come together and help where ever the need may be, we are happy to work with other groups, as and when, as feel it's vital to be inclusive of all others, we really are just a group of people wanting to help... and this web site wants to bring together as much up to date information to help others..
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Speaking out is never easy, and as I have found the more I do, the more my every word gets challenged. In a way this is a good thing, as if everyone agreed right now would there be a need, I am not a professional but explain as an honest aspie from the heart, I have been surrounded by autism spectrum people all my life to varying degrees and since being diagnosed have researched intently looking for my own answers, wanting to make sense not only for myself, but for those of you also still searching…..
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I feel many in society judge others by what they think,
not what they know. Come with me on a journey and
discover we do not all see and view the world the same.
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The Green Goblin! reaching out to support those of you not understood by others, being on the autism spectrum is not as easy as I first thought, I am happy to share and learn and help others into our world, and I feel it’s vital we hear from those that really know and live with being differently minded daily. I'm a strong believer in promoting a positive imagine and helping others understand and accept who they are, and for those of you who want to know, you’re welcome.
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The green goblin is what I feel like at times, the one that says what others think….we are often alienated and made to feel like aliens from another planet, and I have found by letting others into my world, on my terms and not others, does have consequences… sometimes I cannot help but wonder those that question most, are they in fact questioning themselves? I am really not a bad goblin, one that has a heart and the thought of any child growing up as I had to, of young adults lost and not being allowed, adults who would rather hideaway rather than live in an unforgiving world.. We have right too, to be who we were born to be.
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I will start and as we all add to, will put together and when complete
1. Understand me fully asd wise before you judge me...
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ACTION Autism:
Inclusive, independence group for everyone on and off the autism spectrum to improve the image through understanding and by raising awareness. To recognize the needs and aspirations of Autistic Children and Adults living in our society.
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Linking up the growing number of frustrated people on and off the autism spectrum, a start to having our views heard collectively.... "the missing voices"... Autism is not a dirty word, and should not be spoken about behind closed doors...
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If wish to be part of group, please contact us via contacts main web site or email This email address is being protected from spam bots, you need Javascript enabled to view it with short paragraph. about you and your thoughts, why want to be part of this group etc….This is not a support group, but for anyone with any concerns on or off the autism spectrum in regards to any issued they feel need to be addressed.
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Meetings will be in Christchurch, 10.30am on Wednesday (second week) monthly,
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Draft agreement for group (still to be agreed), please add you views etc.. to comments below... but just want to give you some idea of what the group is trying to achieve:
- Change attitudes and perceptions that encourage exclusion
- Identifying problem areas to encourage inclusion
- Acting as a bridge between organizations and communities forming new alliances that will deliver outcomes, and building on existing strengths.
- forming new alliances’ that will deliver outcomes
- To be involved in all levels of decision making regarding our future
- To help work towards a comprehensive National approach
- and to give those of us a voice who may otherwise never truly be heard.
.All minutes of meetings and items agreed, action by Group will be attached / linked to this web page, or below...
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We will take all views on site into consideration, can comment below, via Email (as above), via contacts email or on:http://asplanet.info/forum/index.php
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Why should we continue to pretend to be “normal” it can be hard for us to just chat to people, smile and be friendly, fitting in and being like everyone else can be so important growing up, so when you cannot and you do not understand, it can be such a hard journey – but it really does not have to be.
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Autistic people need more opportunities to harness their abilities, far too often they end up at home lonely and isolated. Often being supported by their families, partners and these are the lucky ones. Alyson Bradley
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ACTION Autism Group Minutes
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A meeting was held on 7 April 2008 where it was agreed there was a need and to set up group, link up the growing number of frustrated people on and off the autism spectrum.
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AAG Meetings / Minutes
http://asplanet.info/index.php?option=com_content&task=view&id=85&Itemid=131
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New Zealand recognised for disability issues progress
For those who don’t know me, I’m Matt Frost. I work as Policy and Information Researcher at CCS Disability Action National Office in Wellington. I am also proud to say I am an Aspie!
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Last month, I was privileged to be able to attend ceremonies at the United Nations in New York. This is somewhere I have always wanted to go as I’ve always been interested in international affairs. I accompanied my friend and colleague, Mike Gourley who is President of the New Zealand Disabled Persons Assembly, as Mike’s support person. This was great as we showed that two disabled people could be a strong support for each other- something commented on very favourably in New York.
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The Franklin Delano Roosevelt prize ceremony was incredibly special for me as a New Zealander. His Excellency the Governor- General, accompanied by Her Excellency and his party, accepted the award on behalf of New Zealand. This prize was awarded to New Zealand as the country which has made noteworthy progress towards the goals of the United Nations Convention on the Rights of Persons with Disabilities. Ban Ki-Moon, the UN Secretary- General was also present. It made me aware as someone with an impairment that we have made a lot of progress and are respected internationally, but that we as a country have a strong reputation to live up to and that we need our future actions to reflect this. It was also really special to attend the Entry into Force of the UN Convention- a policy document which will improve the lives of people with disabilities (including ASD) worldwide.
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New York was an amazing city which I can fully recommend. As someone with autism, I was a little nervous initially that the city would be large and unsafe. But I found it quite the opposite. People were generally very friendly and people that we met were delightful. One just got used to the noise- or indeed didn’t notice it if you were going through lovely places like Central Park or the Pierpont Museum. I was also lucky enough to spend my birthday in NYC- an amazing experience. I found the city to be one of ‘friendly bustle’ overall and not at all unsafe or overpowering. In summary, I was immensely proud to represent our country and disabled people in this way. New Zealanders I feel should realise what achievements the awarding of the prize and the Convention actually are. The prize recognises that we as a country (and the advocacy of disabled people in New Zealand) had a powerful role in obtaining world recognition of the concerns of disabled people worldwide. We should celebrate that- but also commit to continuing progress towards a society that fully includes all disabled people- including people with ASD- and their families/whanau. Matt Frost
Policy & Information Researcher -CCS Disability Action DDI - (June 2008)
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Useful links:
NZ - CCS Disability Action - http://www.ccsdisabilityaction.org.nz/
Everyone we work with is unique, with different dreams and goals. We support each individual we work with to achieve their dreams. Provides services and support for all people with disabilities. It works at the forefront of social change to ensure the rights of disabled people are acknowledged and that disabled people are included in all aspects of life.
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NZ - Changing Laws, Lives and Attitudes - .ttp://www.justiceactiongroup.org/
The Justice Action Group was formed in 1994 to support people with an intellectural disability when they come into contact with the criminal justice system or when they are at risk of doing so.
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NZ - IHC Understanding intellectual disability - http://www.ihc.org.nz/The National Health Committee report To Have an “Ordinary” Life- Kia Whai Oranga “Noa” (2003) contains critical information about the lives of New Zealand adults with an intellectual disability. This information was mostly collected through direct dialogue with people with an intellectual disability..
NZ - People First - About Your Rights
http://www.peoplefirst.org.nz/AboutYourRights/tabid/57/Default.aspx
All people have essential rights. These are the right to:
To be born, to have a roof over your head, food and nourishment,clean water to drink, adequate clothing, someone to love and respect you, good medical care, a satisfying life, no matter what your disability is.
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My views, about me:
I was diagnosed around July last year 2007 with Aspergers, and just before that other associated conditions. I found out in a draft report from psychologist, as I sat in shock had no idea where to go or what to do. As my life unfolded it was a revelation really, but with no support or good information available here in NZ started my own web site, really just to share my journey with others and I guess it was a way for me to deal with losing the old me and finding the real me.
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My web site grow and so did my confidence and now I am very proud to be an Aspie on the Autism Spectrum. My only problem now seems to be society in general, who far to often really do not what to know and exclude what they do not understand... I feel at times like I am in a bubble holding up 1 little ray of hope, but for my children sake what choice do I have.
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So the ACTION Autism is really a start to having the unspoken voices heard. To open discussion for anyone who has any concerns regarding autism, to facilitate easy communication between members regarding our issues and organizing future meetings (on and off line) to enable collective action, and be inclusive and supportive of existing groups.
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I believe very strongly in the importance of an active, independent and strong autistic self-advocacy and I am glad to help set up a group, which will be run by the people who attend, they will decide, a chance to be heard as a group, not just an independant voice...work together to strengthen, grow and protect the autistic community.
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This is just a start to put all your concerns down and maybe make a difference, to give the people wanting to do some think, a chance to be heard. List of ideas of changes and to unite us and other concerned people/groups as one, it will include such groups as ASK Trust (run for and by people on the autism spectrum) but will also be for undiagnosed people, and parents, friends of people on the autism spectrum wanting a voice - you could say a big ideas / think tank!.
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Good education would be a start and just one change that is needed, to allow individuals on the autism spectrum to lead a productive life. Education in itself I do realize is not an easy tasks. School are already under funded, so it will be very tough for each school to provide training and facilities..
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The support each child gets should be based upon each child's needs, with so much lack of understanding regarding children on the autism spectrum the higher functioning children, are often seen as "doing ok" so get no or very little support. But then understandably, the more extreme cases need a lot more support - but they are also at present being let down by many, but there is help and support if know where to go, you not alone::
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IEAG – Inclusive Education Action Group
Support the rights of disabled people to an inclusive education.
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Invitation to families to participate in complaint to human rights commission against
Practices that prevent disabled students fully participating at their local school.
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IHC is currently preparing a complaint to the Human Rights Commission against practices that prevent disabled students participating fully at their local school. The aim is to obtain a declaration under Part 1A of the Human Rights Act that such practices breach the right to freedom from discrimination contained in s 19 of the New Zealand Bill of Rights Act. Read more
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Through our work we aim to promote knowledge, attitudes, policies and practices that facilitate inclusive education so that all disabled children, youth and adults will have equal opportunities to learn and flourish in their local, regular, educational setting.
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We send all our members an update by email every two months. The update lets you know what we have been doing and any interesting news or events relevant to inclusive education. You can also check our website at www.ieag.org.nz and download the most recent update from the News page.
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We have a brochure that outlines the basis for our work, our beliefs and what we do. If you would like copies of the brochure to distribute to your networks please request these from Fran Renton ph: (04) 471 6637 or email: This email address is being protected from spam bots, you need Javascript enabled to view it
Ways you can be involved:
- Monitor your local media for education stories and write letters to the editor or notify the action group to provide comment from an inclusive education perspective.
- Promote the group to your networks and encourage people to join up
- Work on projects in the areas that you are interested in, for more information contact This email address is being protected from spam bots, you need Javascript enabled to view it
Thanks again for your support.
Fran Renton Advocate, IHC,PO Box 4155,Wellington
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Every child is different, so to meet there unique needs is far from easy, as support needed can range from advice, support assistants to special classes and individual projects and plans... hopefully the group can start to discus and suggest away forward, helping to make most needed changes. Also to discuss issues as what happens when these unprepared young adult go out into the real world!
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I continue to hear struggles families face when trying to obtain a diagnosis and/or services. This shouldn’t be the case; of course there are some great services if you can afford them. But far and few between, and often only for the privileged few. There are far too many people desperately seeking some sort of help, care but “The System” for these families hasn’t failed, it just doesn’t exist.
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Individuals with autism and Asperger Syndrome become productive members of society, they are real people with specific types of needs, just a little misplaced and at times totally misunderstood. To capitalize on the strengths of these individuals we need to be allocating financial resources for Autism Spectrum Disorders, establishing an Interagency Autism Coordination Council, which must be inclusive of people on the autism spectrum to make a real difference and to fully understand, so that a real change can happen, and start giving the correct support, education and training.
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Autism is not a dirty word and hopefully one day that will change, just like womans rights etc.. Aitistic people will have a right to be themselves from birth, not have to grow up being made to conform, continually told they have to act in a way that's not natural to them. At present it can feel like we have to have permission to act, and be allowed to be who we are.
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I was born different, but by accepting who I am and telling others, brings with it all sorts of other complications. So I do understand others not wanting to discuss or tell. Sadly so many choose to keep being on the autism spectrum a secret, but that’s only because of ignorance of others, lack of knowledge that in fact Autism is just a different way of being and yes I understand why you others choose not to tell , as we are often judged so wrongly by society in general.
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Have been asked why I am doing this, is there a need. Why because since being diagnosed with Aspergers and associated conditions I have found a new confidence and want to help others on their journeys, and maybe just help to make a small change and together if not for this generation for the sake of our children maybe the next generation will truly understand and support those on the autism spectrum.
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Is there a need, you decide. (Alyson Bradley - April 2008)
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Teaching gifted children with AS: practical advice
http://www.teachingexpertise.com/articles/teaching-gifte
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Paragraph below may be from an article just over 1 year old now, but what has changed - it really sums things up:
A world apart -by Philip Matthews - NZ Listener (Feb.07)
"Does Attwood think that schools and social services are equipped for the apparent increase in autism?
“No. Talk to the parents.” The burden, he says, falls unfairly on them. Whitworth agrees that our schools and social services are in no way ready for autism in one in 100 children. We have huge problems with the education system in New Zealand. We have children who can only attend school part-time. We have children who are discouraged from attending their local school. We have teachers who aren’t trained and teacher aides who aren’t trained. For some of our kids, particularly with Asperger’s syndrome, the education system is failing them."
http://www.nzlistener.co.nz/issue/3483/features/8116/a_world_apart.html
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NZ 'failing kids who struggle to learn'
"He said many developed countries, including Britain and Australia, were ahead
of New Zealand in their research and resourcing of children with learning problems".
http://www.stuff.co.nz/4350693a7694.html
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Letter: Accept autism, promote awareness
Dear Editor, as a woman who is on the autism spectrum, I agree with Lizzy Miller that we need to move beyond feel-good awareness and promote acceptance and understanding. I additionally reiterate with Miller that a group called "Autism Speaks" absolutely does not speak for me - because, as she points out, there are no autistic members on its board.
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Where "Autism Speaks" sees an epidemic, I see an increased awareness and a greater sensitivity to the degrees in which autism manifests.
Thirty-nine years ago, there was no autistic spectrum and people like me were invisible. Now, the times have changed and the picture that is emerging is a far truer one, I feel. That's not an "epidemic." That's a better understanding of reality.
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The only "epidemic" in this picture seems to be one of panic and hysteria, which would rather incite fear of autism than promote greater understanding. This fear and hysteria play out in the tragic cases Miller cites.
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Speaking from my own experience, I was mercilessly bullied in school and called "retarded" by some members of my family. I had to come up with my own therapies and make my way on my own. But just as I have faced certain challenges, I also enjoy certain gifts.
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I don't see myself as "defective" nor am I in need of a "cure," just a helping hand and support when I ask for it.
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My thanks to The Advocate-Messenger for allowing Miller to speak for herself. It is a far greater courtesy afforded us than any by "Autism Speaks."
Cynthia Parkhill, Kelseyville, Calif.
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Our biggest problem is often exclusion from society, rather than our differences
http://asplanet.info/index.php?option=com_content&task=view&id=81&Itemid=127
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Many of us have suffered or continue to on the autism spectrum, but there are people who are not on the autism spectrum and also have problems fitting into society, and if some of us are a little more damaged than maybe should of been in life, who's to blame! – Some of those on the autism spectrum have been discriminated against all their lives.
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Autism seems to be blamed for many things, when quite often it is not the cause, many factors make up who we are, often the biggest cause is the way we have been treated or not. It is the individuals choice of course if they want to except or discuss, some people still feel it is a reflection, defect in them - which of course is wrong, it's just a difference that needs to be understood - that's why I and others in the autism community are reaching out, to help bring Autism into this century, to let you know its ok and many of us are happy to be on the Autism spectrum like myself.
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Email Response below to me signing UK petition, do feel this is the sort of thing we do need to consider here in NZ, But also feel it is an international problem and for any real change we need to unite globally. As most of you know I now live in NZ, but also have many family members back in the England on the autism spectrum.
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From: 10 Downing Street To: e-petition signatories Sent: Saturday, 26 April, 2008 3:09:24 AM
Subject: Government response to petition 'autismrights'
You signed a petition asking the Prime Minister to "Give minority rights to individuals on the autistic spectrum." The Prime Minister's Office has responded to the petition:http://www.pm.gov.uk/output/Page15342.asp
Prime Minister's Office - Petition information - http://petitions.pm.gov.uk/autismrights/
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I feel the response is very vague and just the standard, usual government type waffle! , to them just another thing to deal with and tick off their list. You do not get the impression that they really get it or want to. Just want to be seen to be doing and saying which they feel appropriately fits the middle ground, but who's!
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At present I cannot imagine NZ government being any different from the UK government, but maybe we can help change that a little if we all work together. Autism is getting noticed and there is realization that more needs to be done.
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Diagnosis is not the only hurdle suffers of autism and Aspergers have to negotiate. A lack of services, support and assistance for suffers and their families is another major issue. And its not just about services either, its about creating an awareness of the condition and what can be done about it.
.In England adults with autism to be audited, not such an easy tasks with the marjority of adults still undiagnosed!
Hopefully NZ and other countries will follow.
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| User Comments |
Comment by Guest on 2008-10-04 02:22:56 Dear Alyson Thank you for your very thought provoking e mail. I went to a conference in London on Monday and Tuesday all about Autism and Asperger Syndrome. I met the wonderful Temple Grandin! Best wishes |
Comment by GUEST on 2008-05-20 18:46:44 Excellent idea, this group. As someone with (officially, as yet) undiagnosed AS, and who has worked in the education system as a teacher aide (including with an AS student) I feel that teachers have little understanding of AS kids' needs, even when they have the 'proper' diagnosis. Even when they observe the behaviour accurately, they wrongly attribute the cause of it (eg attention seeking, laziness, etc). Reply: Thanks for that and I agree, when trying to get my older son diagnosed they ask the school and were told by a teacher that no way was my son on the autism spectrum, as they had seem many and they would know! Quite often teachers interpret ADHD kids as what autism is, unfortunatelly its usually the asperger children awho re the ones suffering in silence... Alyson |
Comment by Alyson Bradley on 2009-04-23 17:06:51 "For the self-advocates out there, what got you started? Was it a reaction to oppression or discrimination, or something else?" My reply to a question on Change.org: No time to complete the book right now, far too many wrongs and little rights in my life, but in short as a young lost child I had no labels, no idea.. as a child my reality how ever bad was the norm to me, to grow up with an oppressed discriminated against misunderstand mother who never fitted in this world, my focus was on why... then came the real world, but no one understood, then came the hate, anger, frustration, meltdowns, shutdowns I withdraw more and more, lost self some where on the way, no confidence I gave in and let others use, abuse me pretending I never cared, another layer of en-moulded pain, what choice when no one listen or cared. You reach out and no one listens, just a difficult unparented child, school unable to educate or ever want to find time to care, many parts of my growing up was like a continual battle, ... even when I arrived in the big wide world, put down, let down, disguarded like a used tissue. I guess I degraded myself to believe I was no use to anyone, this part to long and painful to be just a reply, but somehow I found a caring human being who would put up with my in differences, we some how pieced together and made the broken new... which in itself was another huge lonely impossible mountain to climb, with no real understanding, support or reason fo the whys, whats and wrongs.... Then a new challenge life itself, the hardest and most challenging, but more rewarding than I ever thought possible. Which made me question the very existence of me, I questioned and re-questioned and exhausted I found reason to my difference Aspergers and now a passionate advocate to helping others understand, no one should be left to wander, among the dark shadows of life I know the pain all to well.... A reply: @Alyson. Which made me question the very existence of me. I kinda went thru a similar thing in my childhood with my brother. I am so happy as an adult you questioned and gave your own truth to who you were. |
Comment by Guest on 2009-03-11 23:54:27 Hi Alyson, Thanks for your updates, I am so sorry for not getting more involved in your website - you are doing a great job and a brave one. I am still negotiating with the ministry to set up a family governed service for my autistic brother Jonathan, - getting his needs met in a decent way is light years away from current thinking in NZ. It takes a lot of persuading to get them to see that autistic needs are *specific* Hopefully we are both moving towards a more autistic-friendly world!! Regards Rachel My reply: Hi Rachel Sorry to hear your still struggling to get your brother the support he deserves. I so agree in NZ it does seem they are lights year away from the rest of the world at times, and by speaking out often it does alienate me more. But like you have your brother, I have my sons and someone has to be their voice, no child should suffer the way I and many others did and no adults deserves to live in the shadows of life. I also know how time consuming it can be and frustrating that no one seems to want to listen at times. If it wasn't for world wide aspie/autie community I may even start to doubt myself at times. But there are some great people here all doing there own bit, chipping away, together I feel we are all starting to make that difference. I guess at present we can only hope for a more autistic-friendly world, but I do feel the tide is slowly turning for the better and I am not going nowhere.... Thanks for your support appreciated and if their is anything I can do, help your story be heard just ask. Warmest regards Alyson Bradley |
Comment by Guest on 2009-03-01 17:37:44 Hi all, This is a piece I wrote about the PM's job summit on the blogsite 'Humans' (www.humans.org.nz). Hope you find it interesting and this blog finds everyone in 'cyber space' well: I was very interested in the Prime Minister's 'summit on employment' last Friday. Those who know me won't be very surprised by that (but they might be surprised to read that I didn't watch the closing comments live- I was exploring another passion of mine- cricket- go the Black Caps!) But I was interested by some of the comments that I heard, and I also wondered 'whose voices weren't being heard at the summit.' I should say that I'm not against the idea of a summit to discuss the economy- it doesn't take Adam Smith to tell you that the World is in some economic trouble. And being an 'ideas' person myself, I think its crucial that we do some factual thinking and theorising on these matters. That's why I was more than mildly surprised to hear the Prime Minister urging delegates at the start of the day to 'leave their ideologies at the door.' Lets think about that for a minute. When I did first year University politics, I did a course on political ideologies- we had an 'ideology a week!' The main thing it taught me was that EVERYONE has a way of seeing the World- its a series of ideas which offer an account of the present state of the World, gives ideas for how to change it and then outlines how that change will brought about. It therefore would worry me greatly if delegates hadn't gone with ways in which they wanted to change (or preserve) the World to maintain employment. I also wonder, following on from that, what 'ways of seeing the World' weren't present at the summit. Consider these three facts: -60% of disabled people earn less than $15,000 -The employment rate of people with Asperger Syndrome is 3% in the Western World. -In times of economic downturn, people with impairments (especially intellectual impairments) are more likely to be the first to 'be let go.' I wonder who put those three facts to the Jobs Summit? In fact, I know who did- Wendi Wicks, Policy Researcher for the Disabled Persons Assembly. But, as I'm sure Wendi would acknowledge, its a hard job putting the views of 660,000 New Zealanders (and their families or whanau.) This number includes the 40,000 people with autism. However, the Government has urged us to be innovative and come up with ideas. So here are my three top ones: 1. Diversity- making sure we 'include all people' in our solutions to this crisis. 2. Social Justice. 3. Interdependence- an acknowledgement that we cannot survive without each other's talents and labour. People may disagree with my assessment here. But I hope it at least gets people thinking- the thing I think we most need to do in this situation. Matt Frost MY RESPONSE: I so agree with what you say Matt and as with my experience of working with a central London Council for many years, the times I have heard, policy after policy to be more inclusive of everyone, but often stops at the discussion point, funds, resources etc.... or the safer majority option gets kept as the process gets filtered out through often hierarchical top heavy establishments.... To me the only way for real change in regards to ASD in a huge AWARENESS complain by people on the autism spectrum to help others understand, see through our eyes.... For me out in the bigger world, its not that I do not know what to do and have every confidence in self these days... but I can not act and be what I am not and all my attempts in the past have been me trying to be perceived like others want me to be, exhausting and does not work... others need to be more excepting of differences, if I was blind in a interview they would not except me to read out the questions. To me its really all about believing and having the confidence to be self, I do not want to be a preforming monkey for others! and have no intention of being, these days I am my self and happy to explain why I communicate differently, I guess the problem I now have is to help educate everyone so those of us with asd differences are allowed just to be and live in this world on our terms, not pretending to be what we are not, never works long term and I do feel this is one of the biggest problem for many of us on the autism spectrum in life in general, not being fully accepted or allowed... Many asd individuals, especially those with Aspergers are very intelligent and we know what we are meant to do and how others want us to be, but we just want to be who we were born to be, like everyone does. Often its not instruction we need, but understanding from others. Unfortunately while the world continues to be very judgmental on how they perceive others, many brilliant minded asd individuals will continue to be unfairly treated and talent wasted! I rather like the ASAN top 3 priority areas: 1. Support and Empower Autistic Adults 2. End School Abuse and Ensure a Free and Appropriate Public Education for All Students on the Autism Spectrum 3. Balance the Research Agenda to Support Quality of Life Having ASD, being an ASD parent, and knowing what it's like as a ASD child. I some times feel the gap between those of us on the autism spectrum and others, including parents of children on the autism spectrum, views are miles a part and trying to bridge that gap can seem like crossing a mine field. But for the children's sake we are all going to have to find a middle ground, otherwise those of us with ASD may well retreat and stay isolated. After all all children become adults, and as much as I have learned to adapt, fir into your world and to many I may seem like you but I am neurologically different, and pretending is extremely exhausting! |
Comment by GUEST on 2009-07-01 17:37:14 my name is sara i have aspergers and i am also the founder of the asd group which i run in grimsby bi monthly working with nhs proffesionals in the group fighting for change now we are one step closer to making the autism bill law by the end of this year o9 anybody interested in joing our asd group supporting children and adults with asd can come along on fri 28th of august 09 3-4 at tukes brighowgate grimsby. |
Comment by GUEST on 2009-07-28 18:38:49 My name is Richard 38 years old and I have aspergers. I have been having an hard time finding employment opportunities. I have the education. What seems to be the problem. I know the economy is bad at the present time. What worries me the most is since I have little experience I will get left out in the cold even though I have been trying to find employment. Comment: Hi Richard, sorry you have been having such a hard time finding employment, but your not alone. A real biggie unfortunatelly for those of us on the spectrum and when we are employed often we are the ones always having to adapt to suit everyone else, things are beginning to change and now depending or where you live often support programs to help aspergians get work and give support. But saying that many of us do and have worked, I did for nearly 25 years, was never easy and now trying to do my own thing. But aspergers is becoming recognized as a disability world wide, not that we are disabled as such, but by societies attitude often to wards us and with that hopefully will come the support and recognition for the many skills we do have, and good luck on the job front, remember believe in self and then others tend to... |
Comment by GUEST on 2009-11-25 19:00:34 With the way neuro typical people or ordinary people look at things they don’t really understand, they often choose to look at extraordinary things in a very negative way. Even though they don’t really mean to look at such things in a negative way, it just so happens they do. Someone with Asperger’s or Autism is often seen as having a complete disorder, and therefore people like us are forced to be viewed as individuals, who don’t understand anything at all. For years, I was mistaken for being Mentally Retarded. However, as time went on when I started showing my true intelligence and my strong aptitude for computers and computer programming, people’s way of thinking went from: me being perceived as mentally retarded to being just plain eccentric, and some of these very same people went from viewing me as mentally retarded to viewing me as near genius, all because I was able to demonstrate extraordinary computer skills, which I was self-taught. People need to look for something worse, than it really is. It’s like they think the worst and forget to hope for the best in us, until we show them our gifted side. Once we establish that, they seem to feel a bit guilty for thinking wrong things about an individual or group of individuals. We never ever place the words: "I’m So Smart" on our own foreheads. So why let someone else place disability on our foreheads? If you can show people any such gifts you possess, chances are you will either draw them ever closer to reasoning, or they won’t want anything ever more to do with you; or they get enlightened and quite often become entertained by you. People only look for the negative in anything they don’t understand, before they look for any such positive values in anything. It’s not just us, who are so misunderstood by others. Others don’t often think too nicely about anything, which doesn’t fit the ordinary. I’m sure you’ve heard someone say. Boy! He’s a real Genius. Then somebody’s friend will reply: There has to be something wrong with him though? A third party might think. So What? Look what he or she can do on a computer. Can you come up with things like that? Even poor Albert Einstein, people are still looking for reasons of how he’s so very smart, yet those very same people often think he’s quite stupid and rigid. People will always seek for the weaker values in others before they come to a positive value. Even some of those very same people might like you, because of what they didn’t see before. Other’s might even turn the opposite, and hate what you can do. Some people even love people, who can’t do anything for themselves. Once that’s taken from them, they don’t love that person any more. My own Aunt can’t stand me, and she used to love me, when I wasn’t supposed to do or be anything. Sometimes people become afraid of someone, who knows things, without ever being taught them. She is even afraid of little people, (midgets). I hope I’ve made a point here? Because we aspies and auties have to also look at what others don’t understand, often results in unintentional ignorance, which is not always directly intentional. People often fear what they don’t understand. My brother Jimmy died of AIDS, back in 1993, and most people were very afraid to even talk to him, let alone touch him. I’m very proud to say that I hugged him and washed him down, when he got too weak. My Mom loved him very much also. Only three of us out of six kids would push aside the fear, and keep our brother. My Mom and my Bother Tyler were the only ones, besides myself, who also overlooked the fear, and loved our family member no matter what the cost; the three of us loved my brother Jimmy at all cost… He was there for me, when I was small, and even looked for the brightness in me, never did he look for the weak, or bad things in me… So years later, I had to go the distance, and see the good things in him, no matter how bad and fearful AIDS only appeared to look from the outside. We’re often so very quick to judge. Yet, we’re so very slow to understand. Joseph C. Richardson MY REPLY:I agree, many seem to be scared of what they often do not simply understand and wso try and contain. As to allow diversity and differences means they have to change their own on-look on how they view things, the ones that push for conformity most are often the ones that maybe should be questioning self! AB I've heard people say such things before. The ones who judge are usually the ones who don't like what they see in the mirror every morning. Now with what I was saying, we Aspies and Auties often become afraid of things too, before we try and understand them. The so-called normal people aren't the only ones who do that you know. It's rooted deep down in human nature itself; it's part of our own primal instinct of the fight or flight reaction. I think situations like this are rooted based on our survival as a species. All spices of every single kind will wipe out the weaker of that species. Dogs do it, insects do it. It’s all in the game of the fittest. We humans, however can and do try to curb that internal instinct. However, that primal fear won’t ever go away, we can only suppress it, and continue to learn from it. And, until we can all fix ourselves, we can’t do much but push ourselves along on this giant conveyer belt called LIFE! Sometimes a certain species, if it gets too smart for its own species or race, that species or race will also be reluctant to wipe out that individual, who is evolved. So the stick can and does break in both places. If you don’t know enough, they hate you. If you know too much, they still hate you even more. My aunt, and a few people, I’ve met, I scare them. My own sister is also afraid of me. I know things and can do things, and I learn things very fast. Some people have become frightened of me. My friend Brian is very intrigued by me, and he’s even wondered how I know things. I tell him how fast our universe really is. That scares him, but he is very willing to learn higher things through me. The fight or flight reaction is also based on our species or any such species to continue its preservation; to predominate and continue its existence. Trees even do it. It’s a good thing, but when humans try to understand that concept, we often don’t. We end up throwing the wrong people away. It’s sad Animals don’t analyze life, but we humans’ sure do, and that’s when we get it all wrong. Next time someone puts you down, don’t be sad, just feel sorry for them instead. If they put you down, it’s only because they don’t like what they don’t understand, or fear what they don’t understand. It’s in us all, but it’s up to us all to change that dogmatic trait. I love discussions like this. I could go on and on, but I’m sure the webpage couldn’t hold it all. JCR MY REPLY: I agree those that question difference most often seem to be questioning self, ignorance, scared of what they simply do not understand, I try not to judge without a real reason, because when we do we can cut ourselves off from knowledge and growth, as I feel we can all learn from each other, when we really listen AB;) That's why our knowledge is too slow to catch up. We can make all kinds of technical wonders with leaps and bounds, yet we can't even wonder what's beyond our own backyard. It's just like the bogyman under our beds; we have done so very much, but learned so very little in such a very short span of time. Alyson, it's one of them things that make you go hoom! We humans are the only animal, who can unleash the power of its imagination. And yet, we still act like simple, uncivilized cavemen in the twenty-first century. JCR |
Comment by GUEST on 2009-11-28 15:46:43 I often wonder if most of our disorders are caused by our own man made products, such as medicines and everyday food products. It’s just too coincident how Autism is on the rise, as well a Hyper Tension Deficit disorders. Does anyone ever think about such things? JCR My reply: I over process, analyse think all the time its the way my mind is wired, I feel its the way I was born I just am and quite like my over complicated mind most of the time... AB |
Comment by GUEST on 2009-11-29 15:19:28 I agree with you there. Some people tell me I have a traffic jam in my brain. I'm always pondering about something, either it be about life on other worlds, which I really do believe it to be possible. I wonder just how fast does the universe live, via travel? I'm always trying to create complex computer concepts anytime I get the chance to peer out my very own window into wonder. I am very much like you Alyson, I love how my mind works; especially when others think you're dead wrong, until you actually prove it. My friend thought there would be no way, I could generate 3D images out of DVD's, but I did it. I can problem solve complex computer skills, without actually being on one, in that very moment of time. I help my friend trouble shoot them. He's even wondered how I can figure out problems way before he does. My friend is the one who calls me Trimble Little Wolf. This very same person wondered how I have a natural ability for computers in most aspects of the field. He's even created problems on his own computer just to see if I could fix it. Time after time, I could fix it. Now, I'm his trouble shooting assistant, whenever he can't figure out the problem, or we both work in two different problems at the same time. He's even said to me. That won't work! I tell him to try it anyway, and sure enough, I've found the problem by suggesting such things. Now if there is a real problem he can't understand, he lets me take right over and be the tech instead. He's always telling others how gifted I am with computer graphics and my writing skills. Yet to me, all this stuff comes so very easy to me, and I don't know how much I know or don't know, when it comes to computer science or my writing ability. It just comes so very easy for me.... Aspergers does have its grand design, when it comes to having the ability to understand things, without ever having to step into a classroom to learn them. Computers came to me, like music goes to someone. It either comes to you, or it won't. Computer science chose me. I didn't choose it. Joey My reply: Hi Joey, come and rant on AsPlanet forum as hard to keep a conversation going in comments. I added this para today which feel you will relate to : ""A different intelligence that simply does not fit into society as is, each of us different on the spectrum just like those that are not, each with differing strengths and weaknesses, but our biggest battle continues to be with a society that only allows conformist and for me to conform would be to lose part of self." and I agree with you its hard for others to understand our ever ending need for knowledge its like we vacuum up thoughts, push boundaries and come up with some great concepts, getting others tpo listen often the problem :) Alyson |
