|Posted on May 18, 2015 at 4:50 AM||comments (0)|
Monday morning - Woken up with so much wrong that is yet to be rectified. Apparently to some, it should be a "happy" one. I think those who have said this of the rather rushed announcement by Mark Drakeford this morning have to look carefully at themselves in the mirror and realise fully of what has been promised or allocated. We're talking £90,000 PER local authority merely to "clear the backlog of diagnoses" and only for children and young people for diagnosing purely Autism (doesn't mention the rest of the spectrum) and ADHD. It is NOT a promise for providing post-16 service provision. It is NOT a promise to add this money to the de-ringfenced £45,000 PER local authority Children and Young People's Autism Strategy to put to services. The figures don't match up - ask yourselves WHY he is going to be giving out £90k to clear a backlog of diagnoses for children and young people, but NOT put even the smallest fraction BACK into providing post-16 services!. Also, Drakeford said that adults 'need not worry' earlier in the year due to his precious Social care and wellbeing act that doesn't come into force til the end of 2016 at the earliest (and that is for present adult services that are either hard to access, regardless if one has a diagnosis, is being cut by Central Government AND that relies on DIRECT PAYMENTS that seem to be restricted according to what the Local Authorities decide it can be spent on!). So, a "good day", REALLY!? NO PEOPLE - You have been offered something so that Drakeford can return to the assembly unchallanged in 2016 without having to do the right thing. DON'T let him fool you! I am NOT happy about this decision #actuallyautistic
Also, I have to ask, what has he promised the ADHD communtiy in terms of services that Drakeford is not providing now? I'd like to know in case those who are 16+ #actuallyautistic are being sidelined as "troublemakers"...
|Posted on July 27, 2013 at 9:50 AM||comments (0)|
Review of Matthew's Passion (AKA Always question what you think you know about autism)
Whilst there has been many films, books and documentaries on Autistic Spectrum Conditions about, which look at the issues surrounding those diagnosed, very rarely has any awareness made it onto the stage and actually exercised the limits of Autistic characters into new and complex scenes that interact with the audiences senses (not to mention perceptions)..... Until now
Matthew's Passion is the theatre production held from Wednesday 24th to Saturday 27 July 2013 at the Sherman Theatre, looking at the life of a church family with a son named Matthew, whose interest in birds and relations with his community is challenged by unfolding events around him that is vivid for the audience to get a true "autistic eye" for the scenes as they progress - This eye-level above all is what sets this production apart from others into a well choreographed and freely-flowing performance, as well as always making sure the audience is questioning at all times what is really going on throughout, always daring to take the situations Matthew's character has to face to new levels.
Even as an autistic adult myself, I was faced upon first entering the theatre with a mirror of myself. As if without direction as people were getting seated to enjoy the performance, I was immediately bombarded by the sound of birds and smoke filling the room like morning dew fog, and as if it were just a typical day our protagonist Matthew is sat listening and patiently observing a countryside setting that was being formed - well before the suggested "start" of the performance.
The actor playing him maintains this characteristic throughout, which added a realism and consistency that never disappears til the end despite the apparent mundane simplicity of his routine - The character from the off is so refreshingly alive, as if passively shouting at the world "I'm fine thanks - I don't need you".
At this point, if it were not for the conclusion of all the events he's about to face from those around him, then I'd would have been happy to conclude it there. However, the events that follow are so dramatic that we almost feel like we know him and want the simplistic calm he brings us to never end.....
At the start of the performance, we are presented with the supposedly "perfect" rural church community that his parents and their friends live in: This is a veneer that peels off scene by scene - all the while Matthew maintains with dedication his routine, which is interrupted every now and again by his family who want him more involved in their "perfect" world and following the footsteps of his father in the church.
Inevitably the Protagonist and the antagonistic outside world is doomed to repeat an initial comedy of errors and misjudgements, which is further complicated by the intervention of a suggested visitor (Martin) that has been brought in to help Matthew broaden his interests and assist his understanding through music.
It is made obvious that this "perfect" community that Matthew is increasingly encouraged into is about to fracture - the only constant still being Matthew's routine that perpetuates regardless.
His professor-like understanding of birds that is his only basis for what is happening around him may sound vague and naive, but like a good poet, is far better at explaining the where what how and why of each situation, even if the other characters cannot attune themselves to hear his often cryptically wise words. The truth of the matter is that you see that he listens far more to the community he lives in, far more than they ever do for him - even life altering decisions are plucked cruelly from him just because his community thinks he isn't even part of the scenes playing out.... but he always is in one form or another still observant and very real.
The other characters lives are in upheaval:
- The reverend father who has looked through rose-tinted lenses without care until now, finally coming to terms that he was selfish and naive all along...but maybe not in any deliberately obsessive way (suggesting he may well be more like Matthew in many ways, trying to find that calming routine in his life through his preisthood work)
- The mother, who despite secretly wanting to up and leave Matthew and his father, is drawn to realise that she should have done more to find her own calming routine and followed her heart to find happiness through her son, but is too late to stop losing everything she teasures.....
- The lay-preecher: Whilst being caring and devoted to her work is sometimes overpowering and completely overlooks the impacts of her actions, as she thinks that will provide some routine to the community, despite the fact that events in her life are decidedly worse than that of the community she serves (and they don't really think much of her either - providing some of the most comical scenes in the entire production)...
-The visitor Martin: Whose life is also uprooted by the "perfect" community that he entered into, forcing him out of a strangely familiar routine to escape the chaos ensuing, and ousted from Matthew's life, where Martin provided him the only real help understanding and joining in the crazy world around him. His voice is the one we hear to retell this drama with painful reflection...
(I know what you're thinking, yes, I did mention "routine" in all 4 character overviews - because it displays itself as a primary goal of all characters - the goal that only Matthew has perfected with seamless ease until now...)
With his community's world in pieces and the future uncertain and scary for the new discoveries he made, he clings on mortally to hope: and for the last time, he goes into his calm, always constant routine:
Then we're hit with a big shock when the routine mutates into action, where every face in the audience turns to shock, and as a mother realises too late the love for her son, as this correct but naive young professor puts his theory into mortal practice......
routine and calmness is replaced by silence more unpleasant than the loudest sounds, and with it a part of the world Matthew was always part of disappears forever like a bird on the wind.....
In conclusion, the acting was fantastic from the off, the portrayal was extremely engaging and 3-Dimensional, the comic relief elements were deliciously deceiving plotlines that added to the unfolding drama, the use of multi-scene acts in the performance added both depth and a unique view that expanded for the audience events as they happened, the use of similes and literalism between the conversations with Matthew and the rest of the cast showed clearly the difficulties that both Aspies and "normal" people have to overcome and compromise around on a daily basis to make their lives work together. Above all, unlike other portrayals in film and tv in the past, the accurateness of our principle character and protaganist was both faithfully accurate, endearing and especially LIVING - A living, breathing and observant autistic individual - An actor that performs so well his role that he makes you forget he's a performer and more like any other human being on the spectrum (I had to pinch myself to not feel naturally uncomfortable with someone who would act very similar to myself - but this only added to the enjoyment and realism of the performance) It was also convincing right up to his rather unexpected demise that continued the comedy of errors to a heart wrenching conclusion, leaving always a question: Are we the ones who are right or is he right? A question and dillema that will continue to be asked well beyond that night, haunting those supposed "experts" in society that think that they know what Autism is - and for that, I thank the performers, the writers, to the National Autistic Society who were on hand in the foyer with information leaflets to educate the public as they saw the performance, and to my fellow aspies who inspired the work of Mike James who with the whole production team made this all possible. You have set the standard for further works of this kind and for that I salute you
David Malins CertHE
|Posted on February 10, 2013 at 4:05 AM||comments (0)|
Having already shared, campaigned, protested, remonstrated, spoken up and tried to be there about the victims of the DWP re-assessment process voluntarily without re-numeration and with only the time and effort that I could personally muster, I myself will now face the dreaded process that has claimed the lives of an average of 73 disabled people per week. However, this is where the similarities of this with other situation ends: Monday will be the start of one of the biggest, most concise, most through, most critical, most ambitious, most consulted, most documented, most air-tight, most multi-disciplinary and most pioneering effort through the process EVER YET UNDERTAKEN. As I go through this journey with an exponentially growing number of friends and colleagues who have offered every support that I have gratefully and unhesitatingly received - who among them also bring an armada of resources and other people with them. I also have the hope that the prayers where I have expressed concern have been answered from up on high and even now as if by sheer coincidence open up more doors to me that are best-suited to the expertise of a pioneer and a tiger like me. If I struggle, then I won't be alone and the world will be watching and will finally know how to not end up in the same situation. If I win though, it will be a kick in the teeth of the Neo-Nazis Coalition Government that in treason occupies OUR parliament through the apathy of those who are not awake to the realities of the countries of the UK. And there is an additional reward from all these efforts.... We will be SAVING the lives, liberties and freedoms of those who have so far in-vainly searched for an answer against this tyranny that has locked it's jaws onto us and fear they too are only one far too easy step away from their worst nightmares and fears. And all you did for me was assist in even the smallest of ways, collectively, but as yourselves who said "I'm going to do something about this - I won't stand idly by" - Some of you have already done so - and I encourage each among you to find your guts to do what I have always done....Proven the supposed "experts" wrong by just being yourself and being there for others when the need arises. God Speed and Good Luck to all of you who prove me wrong about your intentions
|Posted on February 1, 2013 at 2:05 PM||comments (0)|
For many of you in the Rhondda Cynon Taf area are aware, I recently was made aware of a poster and talk that made some astoundingly neive claims surrounding awareness of Autistic Spectrum Conditions and other ralated diagnoses (Here it is below in full for you to share widely with) and was shocked also when learning the contents of the talk, at the the assumption that the conditions listed could be magically "prevented" and "coped with" despite the fact there is no scientific evidence to back-up this claim, which for most are lifelong conditions that affect everyday abilites and functions:
Whilst I have alot of faith in the abilites and experiences of parent-representatives, particularly in RCT, I was astounded that despite a parent first noticing this mistake of claims in a commercial advertisement, that it took the wise decision by a relative of a fellow aspie in the area to finally bring it to the view of the rest of the Aspie Community, simply because the parent thought "the matter was in hand" when I questioned the events that led-up to this (including the fact that this parent knew the person running the talk)
Needless to say that from all that I found out about the incident, was on the back of immediate outrage by many of you to the claims being made, the wording and the fact that on questioning the company involved on their social networking site as to their qualifications in this area led to improptu deletion of an adult aspies question in this respect.
From this, I felt morally abliged both with the interests of the Aspie Community and under the law to report the company 'Lifetime Wellness' in Rhondda, to RCT Trading Standards Team for misleading advertisement and information being given by a company that had no scientific foundation, nor any sanction to say what they said could "prevent" or "cope with" Autistic Spectrum Conditions, and the fact that it had even been miscatergorised as "neurobehavioural", when it is actually neurodevelopmental (or the example I put is that our behaviour isn't necercerily from impulses, but more on moments when like a baby who only has two communication options to gargle or cry for food, nappy changes, etc, can only cry to indicate the need of the former, as they have no other tools to do so). Also, the qualified nature of the "doctorates of chiropractic" (a hypocritical term, since many are only qualified up to Masters level and no further) to train on Autism "prevention", when they are more likely to deal with issues concerning individual muscular and body pains, etc.
RCT Trading Standards took my complain on behalf of the aspie community and our collegues on the RCT Autism Strategy Group (who also were equally shocked of what was being proclaimed and taught) seriously and took it forward to have a word with the company, of which a report will be made very soon on their findings.
The story you would of thought would have ended there, but the interlocking interests and the threat to neurodiversity and awareness raising of scientifically-proven facts on Autistic Spectrum Conditions were about to get alot more serious.
Despite the claims of the parent rep that divulged this information, also dropped several other bombshells that they felt was just a trivial issue: The fact that this scheme was only part of a bigger, similar course at £200 per participant, touting the same pseudo-science quackery of for example "drink carrot juice during pregnancy to prevent the chance of autism" and "sit round a table more often to cure social problems", etc.
This "bigger course", led by the same people and businessman, were given (believe it or not) sanction to be paid by the Welsh Assembly Government to roll-out the course to school teachers across the region and then across Wales by next year - of which scheme is touted as an "awareness-raising course", approved shockingly of all not by the Cross Party Autism Group nor the Deputy Minister, by the Education Minister, Leighton "Taxdodger" Andrews, whom I have no doubt may have financial motives to carrying this through.
If this is the case, then the Education Minister, based in the Rhondda, has yet again caused another controversy to develop in an area that wasn't even his remit to approve whatsoever without informing the Local Authorities and those leading the Autism Strategy for Wales. It is an absolute farce that all the while when his mates in this scheme are getting paid for delivering an unproven and quite frankly damaging course that will certainly have parents and others wanting to know more about Autism taken advantage of for £200 profit per time: and yet, all other more scientifically and statistically-proven methods that we in the Aspie Community as children,adults and families have repeatedly demanded for are literally begging for pittance in comparison to this sham!
To those who shelter such awful business practise - I will have no hesistation to bring you to the attention of the relevant authorities (and if required ask for your business to be frozen til investigations for business malpractise and trade descriptive violations are followed up) - as you have NO BUSINESSS touting off unproven methods to those who need professional assistance from the like of myself and collegues who are in charge of delivering the Autism Strategy.
In conclusion, whilst we do have a good start to the Autism Action Plan here in Wales, pseudo-scientific schemes like the above will do nothing to assist - Whilst I would like to ask that those who think they have a viable method to come to an autism strategy meeting to look at how you can help, you will not be allowed to do the same thing as you have done in the United States in fooling the public trust.
At least I've done my job - which didn't cost a single penny to do: Defending the hopes and wishes of the Aspie Community in RCT
|Posted on November 7, 2012 at 9:40 PM||comments (9)|
From what has so far been exposed, a very unusual, and quite frankly terrifying situation is unfolding, where the rights of those on the spectrum, particularly those with other mental health issues, is being userped (I used the word advisedly after much reflection as to whether it is right to call it that).
It became clear that two different agendas have been going on when a fellow advocate on the spectrum had their door forced open by those who swore an oath to protect the public trust as peace officers. They failed in their duty that night and caused far more harm in that moment than what they had been apparently told to respond to prevent from somewhere in the higherarchy of their constabulary. It is believed this was also for political purposes against a vulnerable adult who is now my client who I stated earlier I would defend in the legal system.
However, I cannot for the life of me, as a lifelong admirer of the police in the United Kingdom, understand a very strange set-precedent that occured as I undertook what I thought was a very diplomatic role on behalf of my client. To even consider that I had not been told "the truth, the whole truth and nothing but the truth" by the force I'd so admired since childhood struck a chilling chord. Whether this was higher up in the chain of command (which can have it's flaws and faults, naturally) or whether I'd been given "special treatment" as a representative I'll never know until I take the difficult, but necercerry step to challange it.
Why would the press, be handed different information on the raid (and it was a raid without warrent, no matter what anyone else says it may have been), that was only a week before dismissed by the computer records of the force? The questions only get deeper as to why it was not recorded at the time and to why the constabulary's PR department had seperate information that was NOT shared with the rest of the force and to those acting in client's interests. I also have to question the motives of the journalist team who inquired about my client's situation for ratings: This is no time to "stand back" and withold information just to get the headlines. As citizens, they have an obligation to the law of the land and the people of this country. If as a journalist you deny anyone's right to justice for the sake of ratings, profit or popularity, then you are totally responsible for the actions you take!
Either way, I will remain morally fair and unbiased in analysing what happened, why it happened and in seeking justice for my client, as well as to curtail the use of "welfare visits" and to make it compulsory that only the most highly-skilled, trained and competent officers carry this out, and that the indications of such have to be substanciated by far more than just social media messages or political clout that seems to cloud the judgement of lone-hand actions taken by members of the constabularly.
The time of intolerance of the Aspie Community in the United Kingdom MUST come to an end NOW!
I will take up my duty now to that end.
|Posted on October 28, 2012 at 11:40 AM||comments (0)|
If anyone is wondering, a fellow advocate and friend of mine had her door battered down a couple of nights ago for daring to speak out about the hypocrisy of the Work Capacity assessments, DWP and ATOS. Make no mistake, that silencing a vulnerable woman's freedom of speech to reveal the truth by the use of co-ercion is totally and utterly unacceptable. I hope to bring this issue through all legal channels until she receives justice and for sake of others trying to do their bit to protect individuals and families from politically-self-centered and greedy people. http://tompride.wordpress.com/2012/10/27/police-raid-activists-home-for-criminal-posts-on-facebook-china-no-wales/
|Posted on August 22, 2012 at 11:50 PM||comments (1)|
Many of you who have been monitoring my social media may have noticed that 2 months ago, I had sent to nearly every Welsh Council a Freedom of Information request to get an overview of what services were available to Adults on the spectrum in Wales and their families and to guage what the attitude was to those on the spectrum in general. It was also the only way to get a complete analysis on how the Autism Strategic Action Plan had (or in some cases had not) been implimented.
Three questions were asked in this:
1. Do you (the Local Authority) have a fully-functioning Autism Strategic Action Plan and Stakeholder Committee in place? (Of which can you send the agreed action plan for the most recent period)?
2. What is the main focus of service provision that your Autism Strategic Action Plan concentrates on and how much (as of a rough percentage) is this business on Adult and Old Age Services?
3. Can you confirm the number of persons with an Autistic Spectrum Condition that have been sitting on the Stakeholder Committee in the role of an Adult or ServiceUser Representative? (If there is no such person, why?)
These three questions were specifically designed to focus on the parts that I felt most adults and their families wanted to know about the Autism Action Plan in their areas, as well as a test to judge what the response would be when asking for each area's interpretation, operation of and attitudes towards adult autism services (particularly in accountability, transition and self-advocacy from service users).
Question 3 was left deliberately inspecific as to what a "service user representative" was so that the importance as well as the efforts of each council in self-advocacy could be judged and how far those areas needed to go to become "neurodiverse" service delivering authorities. Since the request also asked for anonymised numbers of people involved in the representation process, this would make it easier at a later date to judge where best to target my hopes of a wider Aspie Adult Representative Network, as well as help to analyse any problems in implimentation this might get to at a later date.
So, the result so far....
After the mandatory 40 day deadline for requests to be received (nearly 2-3 months on since I asked the questions), most of Wales' Local Authorities (L.A.s) have responded to the 3 questions I sent them within the limit, with only around 3-4 L.A.s giving either unacceptable, delayed or no reply (and in 2 cases no recept of acknowledgement that a request was asked) to the FoI request sent them.
Question 1 on the whole was answered by most authorities satisfactorily, with many providing details as to the latest action plan for that period in various attatchments)
Question 2 varied in response from each LA. Only a couple decided to answer directly the percentage of it's business that focused on the Autism Action Plan, whilst others gave often lengthy excuses as to their service focus. This in part was due to the different ways in implimentation and the various departments given often mixed or confusing responsibility. It was quite consistant to see many LAs focus on early years education services rather than post-16 adult services for those on the spectrum, this is despite a couple of LAs giving near 50% figures for the comparison between these.
Question 3 was the most disappointing (at one point, an LA described it 'good relations with those affected by autism', giving little more detail as to how such relations were maintained and how the LA is held to account by the wider Autism Community at large) and whilst many did recognise the role of parent representatives and support group co-ordinators, little appreciation was given to actual self-advocates on the spectrum sitting on their boards: Surprisingly the amount of detail provided on this question ranged from a run-down on complete membership of the committees including actual adult representatives as hinted in the question, right down to one LA mistaking the request of numbers of representatives for confidential details of members sat on the boards.
Major FoI request problem areas:
In review of information received so far, about 3-4 LAs were presented as having very serious problems both in terms of accountability to the Aspie Community and their families, as well as having the least satisfactory replies of all the Local Authorities in Wales to the FoI.
Out of this, as well as the various queries and views of service users, Swansea and Neath Port Talbot Local Authorities were identified as the areas where implimentation issues have been critical priority to the Aspie Community in Wales. These two authorities will now be the focus of an immediate investigation into their implimentation of the Autism Action Plan and Adult Services to those with Autistic Spectrum Conditions since they failed to give satisfactory answers both to the FOI request and to other service users who have approached me to look into this further.
A further analysis will be provided once all Local Authoritiy data has been looked at in detail, with this being reported back in time for the Consultation of the All-Wales Stategic Action Plan by the Welsh Government. All copies of the FOI requests and each LA's Action Plan will be made available for download at the same time.
|Posted on July 14, 2012 at 11:15 AM||comments (0)|
Often when speaking as a representative and an expert witness of the experiences, problems, wishes, wants and needs of the Aspie Community, it is very rare to feel comforted by contributions I make (however breif these are). It can be very difficult, particularly when resources for Adult Services for those on spectrum are being cut or not very well provided for. My contributions to the Welsh Goverment Cross Party Autism Group (CPAG) last month have not only been greatly received, but also concerns being put to the highlight of debates by the Chair of CPAG the Right Honourable Mark Isherwood AM, who has utilised my testimony so far twice in questions to both Deputy Minister Gwenda Thomas AM (who is responsible for the Autism Action Plan and it's policy) and the First Minister Carlwyn Jones AM. Having been taught how to debate myself, I was very happy to see Mark put forward the key components of what I had to say in his speeches. I am also very impressed that he decided to use a favoured title of mine rather than my name: The Asperger's Syndrome Pioneer. It is on the business cards that I gave out at that and every meeting or committee I speak at and I am very glad that Mark has decided to use this, particularly to use my testimony to say that we as adults are being left out of the Autism Action Plan for Wales, both in general, in diagnosis and service provision.
Since Marks' points to the assembly get straight to the point, rather than giving any false-hopes (and revealed around £2million that I'm sure he and I will be keeping an eye on how it is spent, along with putting my two-penn'oth into the Action Plan's consultation and scheduling a meeting with Gwenda Thomas AM to address this and scritinise non-partisanly as possible) here is the links to his testimony and to my quotes he's used.
Thank you Mark, on behalf of the Adults on the Spectrum in Wales
|Posted on April 22, 2012 at 10:25 PM||comments (2)|
We have a major problem which is only becoming more prevailing and desperate as time goes on. Promises have been made in many speeches: Offerings have been announced and services supposedly "launched". However, I am beginning to see that these are hollow words that are only meant to serve those who have wasted the Aspie Community's time and efforts in dialogue.
The Solution is certainly not through revolution or dictatorship as some far-right extremists have claimed is the answer in a "if they've discriminated against us, then we'll discriminate against them" way, which does nothing as we become as bad and maybe even worse than those we claim to be protecting people against.
Instead, the answer still is in mutual dialogue and revealing to people that communication is a two-way business and that whoever is in power, that our views are equal to that of anyone else. And for the Aspie Community here in the United Kingdom, this can only be done currently with any success by Aspie Community Diplomats and representatives who can balance the view, but also act in person as the "go-between" to enable such situations to occur successfully.
Tomorrow will be very very difficult, because the authorities have continuosly dragged their feet and have not taken on board the seriousness of the situation. Even if they do, they don't quite understand how to deal with it succesfully simply because many have refused to listen to Aspie input into the debates and to accept them as equal partners and as human beings like everyone else.
Tomorrow, I will be setting a few people straight that these are not just requests, they are also sovreign demands and where I will take a key role and in order to speed things along, will add "High" to my role to become "The Adult High Representative of the United Kingdom of Great Britain and Northern Ireland, and of The Democratic Commonwealth Union Micronation"
|Posted on March 15, 2012 at 2:25 PM||comments (0)|
The bit you've all been waiting for - Here is the 15min speech at Memorial Hall in Barry that I gave earlier on today to launch the Autism Adult Advice Service,to download:
(Right Click and "Save As" in your browser)
Thanks everyone for their support More information on the full launch will be available here:
https://www.facebook.com/pages/Adult-Autism-Advice/323029077724999" target="_blank" rel="nofollow">https://www.facebook.com/pages/Adult-Autism-Advice/323029077724999