Accused: an Autism Mother images

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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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Mommy’s Christmas Book of things…Thanks for everything, NHS, CDT, Aryu, Parsuns, fuckwits

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I felt the need to publish this now…i started a Christmas book last year for recipes, crafts, cuttings, lists etc…I couldn’t face it. I had a list of veg to buy/make like Red Cabbage & Cinnamon carrots – but that’s as far as it got. My heart was breaking, my eyes were constantly sore and puffy and i was aching in my gut like nothing else i had ever experienced. Merry fucking christmas you bastard accusing waste of space cunts, you ruined my family’s Christmas…my partner and i saved it for the boys. I don’t know how we managed..but we did. For them. The boys you could have had put in to Local Authority care…Thanks for being so royally shit at your jobs. I keep reminding myself that i WAS RIGHT all along, in EVERYTHING that i did. I was right, and YOU, yes YOU..Aryu, Parsuns, Garbutt, NHS, were wrong! Damaging & wrong.

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24/12/15

This years christmas couldnot have been worse –
I had hopes of keeping this book as an ongoing xmas to do/ memory
Traditional list of things

NO it’s been been Been Ruined
By me
Social Services –
NHS –
Wankstains cannot do their jobs so blame Me.
Us. Putting us through this shit shit SHIT

To my family      Man, Boy, Toddle
I am so sorry. I wanted so much for this Christmas- we’ve tried to put on a brave face – I Love You. X
Next year will be better. I hope xxxx

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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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Sign the Petition

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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=copylink

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Letter to our MP re NHS & Children Services #ASD #PDA

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I’m publishing a Blog Safe version of a letter I wrote to our local MP following the Child Protection order placed on my Children.

I feel that even though this is a brief encounter with the reality of what we as a family have gone through in recent months, it perfectly summarises the injustice of this case, the way the local authorities are in cahoots and the blatant nepotism that occurs within small-town Local Authority/NHS teams and the ‘Higher Powers’ they believe they hold.

 

 

I love this opening statement by Lydia Lunch in her autobiographical book ‘Paradoxia’

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But, in this instance, I feel I still need to protect my beautiful little family from more shit.

Not sure how this is going to work…I’m taking out names and replacing them with professional titles. I am definitely not doing this to protect the people who caused us harm. I will be getting to them in due course, don’t worry. Where I talk of the children, I will talk of The Boy and Toddle (bearing in mind this whole thing only came about because of the lack of diagnosis for the Boy and Toddle is only affected by the ridiculous accusations of is parents being accused on FII, so in turn is clearly afflicted too.)

I will however state to print that the teams I am referring to are:
Redditch and Bromsgrove Child Development Team
Worcestershire County Council Children’s Services
Redditch Early Help Hub

Our MP has been really helpful, and I met with her about this issue. She didn’t rush me, she let me take as long as i needed and she listened to what I said. Regardless of the Political Party, and how some of their decisions impact on our lives personally, I actually like her quite a lot. She did contact the services on my behalf adding weight to my complaint, but having had a very lame reply from Children’s Services, and still being stuck on Child Protection after a postponed Conference Review, I need to chase this up.

Letter Begins:

Dear Our Local MP

I have asked to meet with you regarding a Section 47 Child Protection Order that my children have been placed on. This is due to the so-called “significant emotional harm” that I have been inflicting on them. They have claimed that I am guilty of Fabrication and Induction of Illness (previously referred to Munchausen’s by Proxy). This has devastated me and my partner and the allegations are far from true. I am sure this is an obvious thing to say but the very fact is that we have proof to disprove this NHS/Social Services allegation and it is being disregarded by Social Services Manager without thorough investigation.

Firstly, the referral to Social Services was made by an Occupational Therapist we had been in contact with regarding my son’s behavioural and sensory difficulties. The Child Development Team claimed that The Boy was a normal 3 year old boy and they were not seeing the difficulties described at home. The strategy meeting held by Social Services was only attended by NHS ‘professionals’ and Early help hub representative who we had never met and no one who was able to defend our corner in our absence. They were all singing from the same hymn sheet as they all work in the same team, none of whom are experts in ASD/PDA. The team had previously decided that:

Quote CDT Meeting 4/11/15 – All

“ All agree that The Boy does not meet the criteria for Autistic Spectrum Disorder including PDA (Pathological Demand Avoidance). Presentation: Significant anxiety issues. No developmental difficulties. Mild expressive language delay and delay in attention skills.” 

There are many issues with this and i have placed a complaint against the NHS staff involved with PALS, as they have clearly highlighted the areas of difficulty that The Boy presents, but have not attributed them to the very condition that we felt prevalent. Autism Spectrum Disorder/Pathological Demand Avoidance. There are many instances that the ‘professionals’ have misplaced the blame for The Boy’s difficulties and we have had to defend our parenting and motives. I have evidence that the NHS have been seeing the difficulties and the symptoms they described themselves are perfectly befitting of an ASD/PDA diagnosis. But PDA variant is rarely diagnosed and less prominent than both Aspergers, and what is now called ‘Classic Autism’. The team work to a fixed criteria and have aligned The Boy’s difficulties with parenting and particularly my own mental health condition.

The final NHS ‘diagnosis’ of The Boy not meeting the criteria should in fact be discredited as i understand it it is not NICE Compliant as there was no present Consultant for The Boy and no Psychologist present at the the CDT meeting where the decision was made.

I have also since found out that in the NICE guidelines, it is the duty of the NHS professionals to feed this ‘diagnosis/or lack of’ in person to the family. Instead, the meeting went ahead, with an Early Help Worker present, who then was the person, who whilst i was arguing our case on the phone with her, was insisting that The Boy DOES NOT have anything wrong with him. That is what and how i was told, and a good few weeks later did we get the minutes in the post from the CDT meeting telling me the NHS position on diagnosis.

Secondly, the Social Services accepted a referral, not investigating that the person who is responsible for deciding a case of Fabrication/infliction (FII), the Paediatric Consultant, was in fact Dr H.A, the only Consultant in Redditch & Bromsgrove, someone who i have previously made a personal and professional complaint about. Who we now know is also the Safeguarding Manager. I would have thought that this Consultant could not have been able to make an informed and impartial decision about whether or not to make a complaint to Social Services and should have referred to an equally senior manager?

Thirdly, and most importantly, The Social Services are now trying to discredit Private Assessments and subsequent diagnosis that The Boy does in fact have High Functioning Autism, PDA variant that were made by two highly respected experts in the field of ASD/PDA. Social Services are accepting NHS opinion over Private simply because it contradicts their initial accusations.

I have shared the very thorough reports with Social Services and they are trying to say they hold little/or no weight as they, in their words “have two conflicting medical opinions”. My argument is that they don’t. The NHS opinion is not Expert, and it is not (as far as i can tell) NICE compliant. They have ignored the root cause of The Boy’s anxiety without expertly investigating PDA symptoms and totally forgotten about the sensory, speech & social delay issues they themselves highlighted.

The Social Services report for the first Conference on 17th December, is a disgusting, discriminating accusation of FII. They have torn apart every facet of my personality to try and make it fit an FII case. The report focuses on Fabrication, and the “gain” i get from this, but the Conference focussed on the anxiety of The Boy, and that it was Inflicted on him. I am yet to see which is the most prominent issue they are following as i do not believe both can co-exist. If i were fabricating it, there is no evidence that i am “gaining” anything from this. And it is not possible to “induce/inflict” ASD on anyone. They have included my One Year old son in this who they have never encountered, and who has no difficulties. The Social Services are not medical and they are relying on the NHS opinion and taking their word. And why? We have disproved the allegation of Fabrication. But the social services are unwilling to accept this, making our next conference on 17th March, essentially the same meeting as before, the NHS will all have their vote when none have been involved for months and we’ll still be accused of FII.

The Social Services have been lacking in communication with us, they have not done what they said they would, they have misinterpreted things we have audio recordings of, it goes on.

Questions to you:

  1. Your opinion on Private Assessments and Diagnosis? is it worth less than NHS? When the Government are trying to push for privatisation of services, why, when we do go Private and call in very expert opinions, does it hold less weight with a Local Government Team such as Social Services?
  2. At a Child Protection Conference why does every individual involved in the CDT get a single vote and not a Team vote? e.g. if 2 staff from The Boy’s nursery attend the CP Conference they get only one vote, likewise if two Homestart staff attend, they would only get one vote. So why  is it acceptable that the NHS get several votes when they work together on the same diagnosis?
  3. A CP Conference Chair that is supposed to be impartial but is actually an ex-social worker working for the very same county council that are taking section 47 action against us?
  4. The assumption of guilt within the first Report, Conference and following Child Protection Plan. The recommendations were put in place to actually prohibit us from clearing our name and getting the correct diagnosis in order to help The Boy’s wellbeing.

Letter Ends.

So, i don’t know why i need to post this, i just feel that if i start posting all the correspondence that relate to this insane case, maybe i’ll feel that i have some online account rather than just my massive and ever expanding folders and living inside my own head with the burden of the injustice.

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CAMHS – WHAT? Discrimination against parents?

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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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