“we will be introducing Education Health & Care Plans”..I’m sorry Theresa May, what do you mean, WILL BE?
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“we will be introducing Education Health & Care Plans”..I’m sorry Theresa May, what do you mean, WILL BE?
With reference to the Review document attached, I appreciate that there are more referrals for ASD coming to light than ever before, and I, more than most, can be cynical about the extent of suspected ASD being banded around. I admit that I am protective of the ‘label’ that gets my 5 year old son his support and, as a late diagnosed adult; I hold my hands up to being blunt in regards to ASD and what that truly means especially when it coexists with another medical or learning disability.
The report suggests various reasons for increased referral rates, the first being increased awareness. This is a good thing, without a doubt – it means people can start understanding the variety of Autism Conditions and know what to look out for in their own children. This should not in any way be acted upon negatively, which unfortunately Worcestershire County Council does in their Overview and Scrutiny Committee outcome on ASD.
Another reason for increased referrals, apparently there is “anecdotal evidence that some people may incorrectly believe it acts as an automatic ‘gateway’ to support and services” How can they reference subjective opinion as evidence without quantifying it?
The problem here is when a parent asks for help with their ASD child, they think that there must be some support and help available, but in actual fact, there is not and this is down to the Local Authority. Parents are at their whit’s end fighting everyone to get them to understand and they, as I did, naively think that someone can help, when the truth is, parents are on their own. This ‘gateway’ to support is a mystical one that does not exist, and services that are impossible to access with a child who has a High Functioning Autism Condition
I’m concerned about the content of the report, but the recommendations made actually frighten me. WCC state they will look for alternative reasons, and to use approaches and interventions for ASD, and this is a worry, as it appears that no lessons have been learnt since the experience we had, and instead the Authorities have taken a massive step backwards for all Invisible Disabilities, particularly High-Functioning ones including Autism.
The long term impact on undiagnosed children and adults is obvious to those of us that live with the condition, and although I feel very sad that this outcome will leave more high functioning autistic people at risk of other medical conditions as a result, such as increased anxiety and depression, the impact on their ‘apparent’ ability to cope in education and the fall-out of them not fulfilling their potential in to adulthood which will ultimately have its own cost implications to the NHS and Local Authorities, it is not this that concerns me most.
I’m massively worried about the impact of the decision to start looking to ‘courses’ as a resolution for the symptoms, as this will not work. They do not offer the support needed and they do not fix ASD symptoms, in fact in a case of Pathological Demand Avoidance these types of ‘approaches’ can create a very unhappy and unwell child as a result.
The main recommendation from the report is based totally on weeding out the cases that will not meet their own criteria and looking to place the blame at any door, other than that of the Autism Pathway. What about the cases who have genuine High Functioning, invisible disability that can only be extracted by an Expert Professional? There is no excuse to cherry pick who gets an assessment and who does not. These are children with individual needs. In what other condition, would it ever be acceptable to not diagnose? It is absolutely unacceptable to put one child’s disability over another, simply because it is too expensive to sustain the current processes in place.
Parents face a continuing struggle with the NHS to be listened to and believed as it is, leading to increasing referrals to Social Services. Child Protection interventions begin when a parent is accused, (wrongly) as I was, of Fabrication and Inducing Illness (previous Munchausen’s by Proxy).
We hear a lot of parents talk about long waiting times for Autism Assessments, ASD Diagnoses, and the battle to gain support. My experience is that in order to even access a fair assessment, a diagnosis, the educational and emotional support that should follow for children, parents are treated like perpetrators of some abuse or worse, treated like they don’t have the knowledge or ability to pick out ‘ordinary’ and ‘unusual’ behaviours in their own children. An ask for help for an undiagnosed child leads to judgements on parenting and worse. This is how important accessing an early, correct and expert diagnosis is in terms of the support available. It is not true that the support is offered on needs of the child, because those needs are put down to other aspects of behaviour, it is true however, that the support offered is a way of teasing out parental issues, using archaic attitudes and parenting strategies which in fact makes the whole assessment process unbearable for child and family.
Review Paperwork and meeting details can be found here: http://worcestershire.moderngov.co.uk/ieListDocuments.aspx?CId=134&MId=2165&Ver=4
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.
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.
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.
Unallocated seating in the foyer
Monday 20th February 2017 at 8pm
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’.
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.
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
Social Services –
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
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.
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 😉Follow me
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:
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
Has anyone in your family gone through a similar ordeal as Bernadette?
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
x Bee BreakfastTree.Follow me
Dear everyone who has left a comment,
Please be sure that i have taken the time to read your honest and heartfelt responses on here. Your stories are immense, and i will try and reply to them individually as soon as i get an opportunity. As you can imagine, life has always been hectic, but now it has gone crazy chaos with emails etc. And i am still fighting the fight.
Best wishes to you all,
With the Radio interview all done, if i said anything stupid, please don’t attack me, I’m doing what i can with the time they give me. I’m still a mother at the end of the day. To those of you who want to listen to the radio covering the story this morning, i have the link here…it should work!
The piece was at 8:18am, so it is 2 hours 18 minutes in to the Breakfast Show with Elliott & Toni.
Thanks everyone for all of your support, kind words mean everything to me. I am conscious that this whole thing is just my one perspective and going ‘public’ has been a difficult choice to make. Please feel free to leave your comments of your experiences, your own news, to show the continuing National nature of the story i have shared.
Bernadette xxFollow me