Overview & Scrutiny Committee: Autism Assessments in Worcestershire

Response to: Worcestershire County Council’s Overview and Scrutiny Committee on Autism.

Scrutin Committee 28.2.18 Assessment of Children and Young People who may have Autism

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

Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
Share this articleFacebooktwittermailFacebooktwittermail

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.

grant_png_black

 

 

 

wcc-logo

 

 

 

Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
Share this articleFacebooktwittermailFacebooktwittermail

Dear Victoria Derbyshire Autism, PDA, NHS

image

Dear Victoria Derbyshire

I wrote to you on 15th June 2016 hoping that you would be able to share my story on your programme. Things with the NHS and their malpractice have continued to worsen since i wrote to you, and the behaviours NEED exposing. Even with an expert diagnosis of Autism for my son, we are still suffering at the hands of the mis-management of our PALS complaint and finding ever concerning emails shared through my access to personal data request.

I today received an email that is horrifying to read, especially in light as being innocent of their initial accusations of Fabrication & Induced illness. as a family we have been heartbroken, by allegations and intrusions, we have been defamed in utterly unacceptable ways. We need to take action, yet having previously spoken with a solicitor, we have no way of moving forward. He stated that although it appears that the NHS and local authorities have acted wrongly, suing for defamation is a “rich man’s game” and one that we will essentially wasting our time. I am beyond frustrated and upset as they need to be held accountable. As with an new email that has come to light today we have no confidence in the NHS moving forward. I am beside myself with anger and grief and need someone to help get justice. We have suffered harassment at the hands of ‘keeping an eye on this family’, yet we have ABSOLUTELY DONE NOTHING TO WARRANT THIS…. i have attached an email for you to see, which contains information that SHOULD NOT HAVE BEEN SHARED outside the confines of the Child Protection Meeting (CPC) and also, it as lies within it which i have audio recordings to prove. I have also sent you a link to my online blog that i tried to keep for my own venting and it is very personal, but anonymous. I am aware that i come across as NOT very media friendly due to my hot-headed language, however, it i can be very articulate and the blog really is only for release. It has details on there of emails from NHS staff members, letter to MP.

Originally i omitted staff names, but i have today contacted my local newspaper and they advised me that it is ok to share names with the print evidence and if there is any defamation, the staff must be given a chance to respond. I have informed the NHS that the Media are aware of this case, and that the local paper ARE picking it up, but with the in-depth and complex nature of the harm the NHS has caused us, they are choosing which angle to pursue.

I hope that this helps you find reason to look in to my situation, as this is happening across the country to parents of autistic children particularly PDA.

Please could someone contact me to discuss further. I am in desperate need to share this and gain support to fight this injustice.
Please.

Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
Share this articleFacebooktwittermailFacebooktwittermail