Autism Mother urges other ASD & Disability Parents to Vote on Thursday #GE17

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I am sending out a plea to Parents of Autism and Special Educational Needs (SEND)…A plea to the Mums and Dads who think that their vote won’t count, the “why bother’, “no-one listens to us” families, the families who have been let down by the current Government and the failing system we have so far endured on behalf of our children. I appeal to the disenfranchised mothers and fathers of children with Autism and SEND who have so often been devastated by a broken system and left with a feeling that there is no change possible for us. Well, we all have a voice and it is so important to use it this Thursday.

I hope to raise awareness of the relevance and importance of making the parent voice heard in Thursday’s elections.

I’ve been considering the Main Three Party opinions and their relevance to all of our Autism & SEND families. It is apparent from the promises that are made (and they are wishful promises that we need to support and get behind) that some parties care about our families and other do not.

In terms of favourable voting for our ASD SEND families, it has to be Labour for me and normal people like me and my family. We are not rich and we rely on the system for our healthcare, our Education and we expect it to be provided at the best possible standards, we are used to our services being funded and to be able to trust Professionals with our children, and for invisible disabilities to be recognised and continually acknowledged. Only decent NHS, Social Care and Education funding will achieve this fully functional role that many children access easily, yet is made difficult for children of ASD SEND.

In terms of Party Manifestos being nothing but wish lists and empty promises, i think it is important to support the party that even acknowledges the very relevant needs of Autism and SEND families. At least if we vote for the right party, the one that makes the promises, we have someone to hold to account to fulfil their promises further down the line. If we vote for parties that don’t even have an air of understanding of our families needs, how we challenge them on it later when they have nothing to answer for, no one to answer to? I have done the leg work looking in to the manifestos, and here is how it stands…

Lib Dems. They make a brief reference to SEND in one paragraph throughout the whole of the 95 page manifesto. They state that they will “Ensure that identification and support for special educational needs and disabilities takes place as early as possible.”


Now this is a mention at least, however it does nothing to say how they will do this and how it will be funded, relying on the fact that all Healthcare Professionals and Education Settings will comply with their wishes and the Lib Dem desire to support SEND children is not sufficient engagement. Let us not forget, this all relies on whether or not an SEND has been identified in the first place, and what it takes for the children families to get to that very important point.

Conservatives, Well.

They mention the word Autism once, in a flippant and second hand manner, lumped in with Learning disabilities. Now i find this dismissive of high functioning Autism and those with other invisible conditions that do not have learning disabilities, this is dangerous territory in my opinion. Invisible disabilities are already way underfunded and the Tory statement that the two should be combined is unacceptable in my view and an indication of their long-term money saving endeavours…potentially a further reduction in services to those who are not easily diagnosed as Autistic, and with all of the cuts that the conservatives are insisting they will still make post the Election, i simply cannot see how or believe that they intend to fund the massive overhaul of services that needs to take place in healthcare and education for the Autistic and SEND communities. The NHS cuts include unfunded CAMHS, a service that the majority of children with invisible disabilities need access to. Constant cuts to to local Councils leads to inadequate children services, lack of training and massive lack understanding, causes huge problems and extra unnecessary workloads dealing with unfounded cases of Child Protection. None of this looks likely to change within the Tory manifesto promise, nor going forward after Thursday.. “We have a specific task to improve standards of care for those with learning disabilities and autism.” Again, i wonder how they will roll this out considering the lack of money and the lack of Autism awareness that this one sentence screams.

Ok, so for my money, it is Labour all the way.

To get our voices heard we firstly need to be understood..The Labour manifesto tells us straight away that they ‘get’ autism, it is in the language, the tone and the coverage it gets within the manifesto. There are many references to Autism and SEND – but aside from that, it is written with both fact and empathy. They speak of “Neurological differences”, “Neurodiversity”, “inclusivity” and “support” for children and Parents..the manifesto goes beyond simply making a brief reference to Autism & SEND for the sake of ticking a box as with the other Parties. These promises seem attainable. With more money put in to the NHS, a diagnosis will be better timed and therefore have better long term impact for all involved. This obviously avoids the massive cost implications that a no-diagnosis could potentially turn through with unrecognised system being left to fester. Early diagnosis and correct support for ASD and the whole family will not only save money, it will save families. It will save lives…just by getting it right first time.

By funding better resources a Labour party is our only hope of gaining the appropriate understanding, funding and ongoing support for the long journey that SEND is…This journey beings with a GP or Health Visitor Appointment and goes all the way through to additional Teaching Assistants in school, flexibility of thinking and up to date autism training in every sector, moving all the way through to DLA or PIP payments. An early understanding will set up our growing kids to not have a constant battle to explain themselves, or to be understood in the wider world.

In our personal situation, i feel that the NHS and Social Care were incredibly unaware of the reality and importance of gaining the right diagnosis and ‘seeing’ the disability of our son at all. Had the small and insular team been sufficiently funded, or had i had time to approach the CCG to insist on expert in ASD PDA, we could have avoided the allegations of Fabrication and Induced Illness that the ‘team’ decided to tarnish me with. Had they been better trained with up-to-date Autism advances then, perhaps my questioning their competence might not have been so challenging to them and the rampant parent blaming and inherent culture of incorrect personal judgements that ‘Professionals’ think that they can lay at the doors of our homes. We would never have had to prove our innocence of FII and pay a Specialist via Private consultation to gain our ASD PDA diagnosis. One that has now been rolled out across the three quarters of my family. An horrendous fight to save our children, my partner and I were treated like dirt by the ‘System’ and the Professionals. NOW, if we had been able to tap in to expert opinion in the early stages, listened to when we asked, and experts been funded by the CCG prior to Occupational Therapists ill-advised referral to Social Services, perhaps our story would have never occurred. As it happens, the lack of understanding in Autism families and our version of events is a far from a one off, it is a silent epidemic within the NHS and Social Care system, one that is worsening all of the time and I put this down to lack of funding, lack of knowledge and lack of empathy…something that the Labour Party and Jeremy Corbyn do in fact promote and align themselves with improving massively for ASD and SEND.

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Redditch Advertiser coverage of Spoken Word Event

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The advertiser have covered the event here. http://Advertiser

Awareness, promote awareness.

DOWNLOAD THE FLYER HERE: Flyer VOICES 

Autism Spoken Word Event at the Artrix

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Autism Spoken Word Event at the Artrix

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Voices: Autism in Spokenword

Featuring Janine Booth, Tom Bowes aka ‘Autistic Genius’ and Bernadette Louise

An evening of poetry and spoken word including performances by those who are on and support people on the Autism Spectrum.

Performance Poet Janine Booth describes herself as “a Marxist, trade unionist, socialist-feminist, author, poet, speaker, tutor, former RMT Executive member, supporter of Workers’ Liberty, aspie, bi, Peterborough United fan.” She is has an established catalogue of work dealing with Autism and much more.

www.janinebooth.com

Tom Bowes is a public speaker, Autism advocate, writer and vlogger. He runs a Facebook page called Autistic Genius, where he creates videos explaining the different traits of Autism.

www.facebook.com/AutisticGenius1988/

 

Bernadette Louise is a Mother, Artist, Writer, Fighter. She describes herself as having “a fiery tongue” and writes an “honest sometimes brutal account of parenting and partnering the Autism Spectrum condition”. Bernadette has a history of making self-confessional artworks, and has been frequently supported by Arts Council England.

www.BernadetteLouise.com

Unallocated seating in the foyer

Monday 20th February 2017 at 8pm

£8 (£6)

http://www.artrix.co.uk/whats-on/theatre-dance/voices-autism-in-spoken-word

Also, at the Artrix is the exhibition

Accused: An Autism Mother
Bernadette Louise creates a spectacle of oversized Healthcare posters emphasising the ‘invisible’ symptoms of Autism Spectrum Disorder, Pathological Demand Avoidance. In an honest response to the Authorities who accused her of Fabricating and Inducing her Son’s ASD, she uses documentary mobile phone images and direct quotes from the assessment process to highlight a desperate need for PDA Awareness. Quickly the professionals focussed on her as Mother, instead of the Child’s symptoms they were faced with. Bernadette intends to highlight the contradictions and accusations that caused the NHS to refer to Children’s Services resulting in a Child Protection order. Through her Art and Spoken Word event Bernadette exposes the true harm caused by the Authorities to families with ‘unseen disabilities’.
http://www.artrix.co.uk/whats-on/exhibitions/bernadette-louise-accused-an-autism-mother

 

 

 

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Get our voices heard: Fundraising

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Dear all

I am on an Autism mission. I am crowdfunding for a Creative Public Engagement project. I am compiling the stories and the battles that need to be shared and desperately need to be heard by the public and by the Professionals. To do this i need a few things…fuel, coffee, printing, time and space. I need to maintain a presence, online and in person…and i need buy people tea, cake and the freedom to share their experiences of Autism & Invisible Disabilities, and the challenges it presents.

I need to continue the work i am doing and need to get the Parent Voice heard.

This project is already in existence and currently in its infancy. It’s supported with confidence by Artrix, Arts Council England and Worcestershire County Council as an offshoot of my Exhibition Accused: an Autism Mother. The idea has legs and an ability to share similar stories across many sectors and many a diverse group of families, this is a massively important part of what my work is…sharing and exposing truths and allowing the silenced, the shamed, the innocent and hurt an opportunity to have their voices heard by the wider world.

I am no self-promoter and i rarely admit i need support, and i never ask for any kind of help…until now. I am so passionate about this work and the importance of sharing our joint experiences, that i have started a Not for Profit company to make this awareness project go as far as it possibly can…it would be amazing if you could find something/anything to donate to add to the Breakfast Tree pot for Public Awareness and Engagement.

Thank you, fantastic people

Bernadette

If you would rather give anonymously you can do so here at my Just Giving page

 

 

 

Here is the link to the Artrix Exhibition Accused: an Autism Mother 

 

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ACCUSED: An Autism Mother – the Art Exhibition

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So here it is, the exhibition is now live and official.

artrix-logo‘ACCUSED: AN AUTISM MOTHER’ at the Artrix Arts Centre February 2017.

Supported by Arts Council England and Worcestershire County Council

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Exhibition:
ACCUSED: An Autism Mother
Bernadette Louise creates a spectacle of oversized Healthcare posters emphasising the ‘invisible’ symptoms of Autism Spectrum Disorder, Pathological Demand Avoidance. In an honest response to the Authorities who accused her of Fabricating and Inducing her Son’s ASD, she uses documentary mobile phone images and direct quotes from the assessment process to highlight a desperate need for PDA Awareness. Quickly the professionals focussed on her as Mother, instead of the Child’s symptoms they were faced with. Bernadette intends to highlight the contradictions and accusations that caused the NHS to refer to Children’s Services resulting in a Child Protection
order. Through her Art and Spoken Word event Bernadette exposes the true harm caused by the Authorities to families with ‘unseen disabilities’.

Spoken word event:
An evening of poetry and spoken word including performances by those who are on and support people on the Autism Spectrum. Featuring the popular Autism Vlogger, ‘Autistic Genius’ and visceral Artist Bernadette Louise.

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Vic Derbyshire show brief mention of FII & Child Abuse in Fatigue feature

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THIS SHOW NEEDS TO START TAKING NOTICE OF WHAT IS GOING ON WITH PARENTS OF UNSEEN DISABILITIES

C’mon….It is about time that they responded to one of my emails and actually decided to break the silence and help families realise that they are not alone with the horrible and INCORRECT allegations of child abuse that arise from the healthcare servcies who do not see the invisible conditions. YES that person who spoke about fatigue and ME was right (post edit: Jane Colby of Tymes Trust), if something that the health professional suggests doesn’t work, (in this case it was discussing CBT with Chronic fatigue) they automatically assume that the parent has another agenda, a disgraceful and lazy accusation of Munchausen’s by Proxy. It is tearing families apart and it is not only with Fatigue as per the feature on the show just. IT IS WITH AUTISM. AND IT HAS HAPPENED TO ME, MY PARTNER AND OUR CHILDREN! No harm was found, after a hell of a time. Yet, it was gutwrenching and unfair.. and no one has apologised for being WRONG.

Please can someone pick up this story??? Much more needs to be done urgently to lift this overwhelming shadow that the NHS and Children’s Services place on innocent and incredibly caring parents.

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ACCUSED: Autism. The Art Exhibition about PDA

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After a while of not posting, not being greatly social media sociable, i have decided to update on why and what’s been going down. I have had a temporary break from dealing with the NHS complaint and have been working on my art. This is good and bad. Having a break from the complaint doesn’t mean it has gone away or been at the back of my mind. Far from it. Not working on it has caused me more stress and made me have less focus on the things i need to do. I am constantly thinking about the way in which the complaint has been handled and what an abomination the whole situation was and is, and i NEED to fight them still. No matter how lacking in motivation i become, i still think about the things i should be doing. Trawling through all of the NHS and Social Services lies and defamation is traumatic, it is emotionally hard work and i would rather not be doing it. However, i cannot let them free of the burden they caused my family and will persist. Even if it is at the expense of my own health and wellbeing. They already did enough to scupper that anyway, so what’s a little more of a battering?

So in my break from the complaint, i have placed my energy on a project not too far removed from it and it is my art exhibition. The exhibition is about Autism Awareness, but not as you know it. It is a PDA awareness project, and a parental blame project. It is a tangible backlash and two fingers up at the NHS and the way in which they dismissed the very symptoms of PDA and blamed us parents for the issues. This is the reason for AWARENESS and it doesn’t stop at just reading a bit about PDA, it is about respecting parents enough to realise they are genuine and aware people themselves.

bl-accusedThe work is based on the ‘Invisible’ symptoms of PDA. It also highlights direct quotes lifted from the notes and information i have from the NHS…that in itself makes a hugely interesting read.

There it is.

ACCUSED: Autism
by Bernadette Louise

The exhibition is funded. It has backing from Arts Council England and Worcestershire County Council. And it is taking place within the very geographic region that harmed us, Redditch and Bromsgrove. The Artrix Arts Centre in February 2017. It isn’t that long away, and i am finally getting to grips with the content, but i have a lot to do and a lot to organise. I also have to be a parent and a partner, so the NHS idiots can wait a little while longer while i attempt to carry on with my life.

If anyone would like to contribute to a piece of work, i am running a public facing engagement project and would love to include your experiences too. Please do contact me if you would like to know more about that or any part of the work.

Photo by Mac James 2016.

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So is this an admission of wrongdoing? NHS reply

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So this is just one of the comments in the recent NHS response. And yet they still insist in their letter that they are not and were not wrong to act in the way they did, and they continue parent blame throughout the report. More to come, once i’ve dealt directly with the imbeciles.

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Inept and displacement of blame continues through the heart of the ASD Assessments and Child Development Team in Worcestershire Health & Care Trust. Ha, Trust. Do not Trust them, their name is surely mis-advertising and misleading to us mere NHS punters, surely they should be done under the trades description act 😉

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Redditch Advertiser facebook page comments

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Redditch Advertiser Facebook pages has sooooooo many comments relating to our story, if anyone wants to add to them, please feel free to do so. I can’t seem to get a direct link to the facebook page & comments… But if you search it out you’ll find it on the Redditch Advertiser Facebook page.

Here is my response to the comments:

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Dear all, thank you to so many of you who have commented on this article. Yes it is the briefest of articles and no one said that it would come across as in depth as it needed to in order to expose the full extent of the malpractice that my child and us as a family underwent at the hands of the Scott Atkinson Staff, Paediatrician, Occupational Therapist and CAMHS. Many of you shared similar experiences with the same team, even pin-pointed a particular staff member that caused us the trouble after i had complained about him. Yes, it is always difficult to diagnose ASD so young, but real experts, ASD experts with experience of PDA can in fact diagnose as young as 2, my son was nearly 4. We never imagined that a diagnosis was on the cards, but we also realised after the team were not helping matters and nothing they said was working that we needed to be listened to. We never envisaged that it would have come to Social Services in order to get our boy the help and understanding he needed then and going forward. We only managed to get an assessment and susequent diagnosis of ASD PDA by the skin of our teeth Privately as the NHS had not sought out a second opinion prior to accusing me of FII. The first expert professional that came across my son was able to see that everything we had said all along was valid and our suspicions about PDA were correct. The CDT & CAMHS were not in the slightest bit interested in my thoughts regarding PDA and were very involved and focussed on me as a Mother. Not all NHS teams are as bad as the one we encountered. But it does go alot more behind the scenes that this article shows. As far as i am aware and concerned they were unable and inexperienced in PDA to diagnose it, however, they didn’t say that more time was needed to assess him, they actually totally closed his cases and said outrightly that he DID NOT have ASD including PDA. We were frustrated by this, however, never in a million years did we think they their secret opinion of me personally was so low. I am outspoken, and i challenged their small-minded view of things directly, I highlighted errors they had made and incompetence where i saw it. No one likes being told they are not doing their job properly, sure, but it doesn’t make me unhinged for saying so. I am who i am, and they took exception to me, personally. They had been accessing my personal and social webistes, such as facebook, my professional work website and they thought that this gave them reason that i might be fabricating or inducing. The team stepped way outside of their job roles and their personal and subjective opinions have been taken as medical and objective reports, which is not the case and should not be acceptable. I accessed 53 pages of emails between staff and then saw how deep this went. Please never hesitate in contacting your GP if you feel you need support for your child, but be aware that, in our experience, the assessments quickly become less about the child and more about the parent. This for me was always about getting the support for my son, yet they made it about me and not him. The PALs investigation in my case is still underway. For those of you who had/have similar experiences, PLEASE go to PALS and lodge a complaint. It is amazing how many people have contacted me with similar stories to mine and they have done nothing about it. Be aware too, that as parents to those with INVISIBLE DISABILITIES we are fighting a very different battle to those parents with children of physical medical conditions and disabilities. There is no outright test for autism, we have a lot more of a struggle to get those ‘symptoms’ recognised and if the team are stuck, they close cases and blame parents (in our case and many more i am now aware of). It should not be the accepted that the NHS we employ to help us, simply get stuck, blame parents, when do not know what they are dealing with. They didn’t seek an expert opinion and had they done, the whole Childrens’ services ordeal could have been avoided. The team did go to Children’s services when they shouldn’t which they have since put in a round about way in writing to me. “in hindsight a referral for FII, may not have been required”…their words. Please feel free to read more about this and contact me if you wish. This is the documentation website and people’s comments are welcomed. http://breakfasttree.com

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Has anyone in your family gone through a similar ordeal as Bernadette?

She was accused of causing significant…

Posted by Redditch Advertiser on Wednesday, 24 August 2016

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BBC Radio Hereford & Worcester Interview

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Dear all

Here is the BBC Hereford & Worcester Interview i did with Elliott & Toni on 25th August 2016.  This is the audio extracted from the full show.

This is my original post about it here

Best

Berni

x Bee BreakfastTree.

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