EXPERT BY EXPERIENCE

Biography  

I have vast professional knowledge as well as personal lived experience of Autism Spectrum, Pathological Demand Avoidance, Fabricated and Induced Illness, Special Educational Needs and Mental Health. I share my stories, along with those of others so that with ‘Professionals’ and Senior Managers can have a real-life account of how services feel for those that use them. As a Parent Carer Rep, I represent all SEND parent carers in Worcestershire at high level meetings and work alongside the Local Authority, Health and Care Trust and other agencies       to give them a better understanding of the needs of a wider demographic. This in turn has a positive impact on the services that they design and the people they employ with the hope to shift the culture of understanding towards disability need, appropriate considerations made, and a deep coproduction of services required by families and individuals. 

CV available on request. 

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ACCUSED: An Autism Mother – the Art Exhibition

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


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

Supported by Arts Council England and Worcestershire County Council

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.Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
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ACCUSED: Autism. The Art Exhibition about PDA

 

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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Sign the Petition

NHS & Social Services Understand parents of Autism/PDA Pathological Demand Avoidance

Please follow the link and sign my petition for ASD/PDA recognition by the Local Authorities and NHS Teams we deal with daily as parents. I am petitioning against the Parent-Blaming culture that is rampant amongst ‘Professionals’ and want to draw more attention to the actual impact their actions have on families

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https://www.change.org/p/alistair-burt-mp-nhs-social-services-understand-parents-of-autism-pda-pathological-demand-avoidance?recruiter=533936555&utm_source=share_petition&utm_medium=copylinkFollow meFacebooktwitteryoutubeFacebooktwitteryoutube
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Child Protection update Children’s Services & NHS Eff up

Right, i do not know where to start with this update. The children came off Child Protection yesterday, at the first review!… It’s basically unheard of. Some absolutely disgusting allegations of FII (Fabricating and Inflicting Illness) were proved to be incorrect. We have a Diagnosis by two very well established Professional Experts in ASD/PDA (Autism Spectrum Disorder/Pathological Demand Avoidance). And we had one totally corrupt and non NICE compliant NHS diagnosis of ‘nothing wrong – blame parents’ that made the referal (they are fools! Influential fools though). So we very rapidly, but with a lot of my research and fighting came off Child Protection. Some might think this is a big deal, off CP, great. I wish it were that simple. The main thing here is the boys are fine, we as family are no longer threatened and we won, right? Yes. The feckers were wrong. But No, it’s a Small victory in light of everything that came before and has since followed. Literally the morning after the Child Protection Review where a unanimous vote took the kids off the CP plan, I recieved emails from the NHS Information Governance team that i’d been trying to get for a long while. The emails i requested under the access to personal data act and i finally got them.

Holy freaking sheeeeet.
Yesterday was a victory yes, but the way in which the Social Work Manager tried desperately to cover her arse by telling out-and-out lies was far from pleasent for us as a couple, and the lack of professionalism by the Chair and Social Worker surprised most of us. Anyway, the boys, they are great, safe, gone and going no where, and thank frig that’s all finished. Social Services messed up. Big time. It’s my job now to evidence all their errors and take them to court for various legal breaches. Of course, I’ll do that, it’s a bitch and it won’t be an easy task. However, although knowing it is pretty complex, i know it’s cut and dry from my perspective once i finally gain the strength to go through the reports with a fine tooth comb. Bang to rights.

 

Anyway…there is an in depth complaint in with PALS (Patient Liaison Team at the NHS) and it has been in progress for some time…it is this complaint that i feel gave weight and reality to my concerns with the initial referal from the NHS Child Development Team to Children Services.

As usual i have had do to all of the ground work, and working hard to get to the bottom of the injustice. I worked my way through reports, minutes, regulations, laws, all to get to the point i knew injustice had occured. So with our victory yesterday i should feel good. But nah..I knew the main task had just begun, the work has just started to see the NHS complaint through to the absolute end re Clinical Negligence and Disability Discrimination and i knew my work was far from done till i saw any kind of apology or resolution from Social Services…

Then these NHS emails arrived 24 hour courier signed for. This morning. Between dropping off the boys at nursery and going to our vet for pups last jabs…A heavy A4 parcel delivered by Royal Mail. Very quickly sifted through…and to pick up where i lost track above…holy freaking sheeeeet. The utter tripe in these emails is super intense, mega accussing and wholey stalker-ish and got to be infringing on my one and only right as a creative and passionate (and positively accurate) human-being. My goooooodneessss graciousssss, this is more mega than i ever imagined. They said some awful stuff which i will shortly divulge, they are so screwed, but this all takes my time, energy and emotion to fight. I have the fight today because I’m angry. I might have the fight tomorrow because it settles in, but how long can i keep fighting (right now i know I won’t give up) i worry about the impact on my family of my preoccupied mind and the excessive ‘work’ it takes to fight these f!ckers. I don’t have any legal training, but i know common sense, i know fairness and i know where to start looking, but i can only do so much. I’m now out of my depth with the legal side since these emails arrived today. They have so much to answer for. I will not stop fighting but it would be really refreshing if someone would offer some help, once in a while, when i can’t do all i need to as I’ve already done so much, is there nothing to take the weight of this particular logistical and administrative nightmare off my shoulders?Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
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CAMHS – WHAT? Discrimination against parents?

CAHMS Discrimination

Now change the words “High levels of anxiety” for ‘Cerebral Palsy’
CAMHS – Case now closed. Report letter written and seen by parents. Cerebral Palsy. Recommendation made that parents seek support for their cerebral palsy. The Boy senses their cerebral palsy and so gets cerebral palsy too.

Now change the words “High levels of anxiety” for ‘Cancer’
CAMHS – Case now closed. Report letter written and seen by parents. Cancer. Recommendation made that parents seek support for their cancer. The Boy senses their cancer and so gets cancer too.

Right….read all that? Too much? I usually am. But i am totally screwing at the actual blind-sightedness of these people. I cannot understand for one second why they would struggle to take on board my partners very own difficulties as potential GREEN LIGHT for what is going on with our son. Yeah, genetics. It’s a no brainer. PDA.

My own anxiety has been compounded beyond belief in recent dealings with this kind of ignorance and essentially disability discrimination. I have a diagnosed mental health condition brought on largely in my adolescence, it has come to the forefront of late due to the stresses we live under. Is this truly something that CAMHS would like to take me on about? To suggest that it is our doing that our own disabilities are causing the situation / causing our son harm? To suggest for a moment that i have passed on my mental health disorder to my son, WHAT THE EFF?

Our personal anxieties are born out of perfectly reasonable-reason, much of which can be attributed to our environment and upbringing, however, my partner has a neurodevelopment disorder fuelled by anxiety and that can not be dismissed here as, us, simply needing to deal with our own shit first. HA! What the flying effing gitswine?!

….Oh and yeah, we have to two children. The second one is a different kind of a child. So clearly, we have broken The Boy but the Toddler Tank got away scot free. How cruel and insensitive of our disabilities to cause so much crap for one child to damage him for good, and yet the other gets off pretty lightly. Except for the fact that he doesn’t…he is assaulted every.single.day. by The Boy’s ‘anxieties’. But no, it’s pure aggression and lack of interpersonal skills and empathy that are causing the second boy Toddle to be knocked from pillar to post, so, that’s our fault too..

NATURE. NATURE.

NOT nurture.

So there.
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