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Why We Need to Start Looking at Autism as a Fruit Salad – an article by our Ambassador Paul Isaacs

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It’s 2021 and its time to start looking at autism in a more three-dimensional approach, it’s time to bridge gap and accommodate both the social and medical models of disability (in the context of autism). The Fruit Salad Analogy was created by Donna Williams (Polly Samuel) in 1995. 

So, let’s get to the basics of information processing challenges

Then there are mental health challenges (with examples) 

The common pieces of someone’s autism “fruit salad” are 

Conclusion 

There are so many inaccurate and quite frankly celebrity and bias theories about what autism is and isn’t, but the truth of the matter is that autism is not a static condition that presents itself in the same way from person to person – it is a clustering of conditions that can be found in both neurology and biology. 

If with have a healthy mindset of sharing useful and productive information and broaden the narrative to include – education, care homes, parents, social services, parents, and people on the spectrum then it creates a solid environment for meaningful changes that have real impact on people’s lives.

Paul Isaacs 2021

 

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Your Breath Is Your Superpower!!

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An article by our Well-being Ambassador Giuliana Wheater and her video!

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Your Breath Is Your Superpower!!

It really IS!!!

Your breath can alter mood, help you sleep better, lower heart rate and blood pressure as well as open up the lungs and push all those totally delicious happy hormones and coping chemicals up from the gut!

And it is free!! As well as being a handy tool to keep in your self-regulation / anxiety boxes. When our diaphragms are open, we breathe much deeper, this preventing panic or anxiety attacks. It also means we are much less likely to reverse breathe which is what people who are under long term trauma or stress can do. By adjusting the breath, we can boost mood, productivity, drive and focus as well as empowering ourselves as we push that utterly gorgeous and all-important serotonin and dopamine up from the gut. Blood and oxygen also zoom up to the brain, bringing clarity and concentration.

We can also use our breath to lower our energy, ground ourselves, prepare for sleep and to calm down our busy bodies and brains! You can have great fun with younger kids or with those who find it difficult to concentrate for long periods of time by putting the different breaths into stories, games, treasure hunts or lucky dips.

Have a wonderful week everyone, take care of each other, Love Giuliana xx

https://www.therapiesforspecialneeds.co.uk/

 

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Autism – an article by Bex Moore

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Hello there. My name is Bex – I am 28 years old and I live in England with my parents. I was diagnosed with autism at the beginning of my twenties. At the same time, I was diagnosed with Jacobsen Syndrome a rare chromosome disorder (11q deletion) and polycystic kidney disease. 

All through my life and still now I feel like the odd one out and I do not fit it. Even though I am 28 I have never felt like an adult. I struggle to process and understand a lot of things, I find it hard to make friends and I get obsessed with things a lot too. I have been told by many people I see the world and do things much more differently to everyone else. Sometimes I do not even think I am from earth. 

Many people say I do not look, sound, or act autistic and there is nothing wrong with me. I have never ever felt accepted and believed both in my own family and out in the rest of the world. This is something that really upsets and hurts me especially as it is some of my own family saying these things to me.

 I have a blue disabled badge but when I get out of the car, I do get many strange looks because I do not have a wheelchair or any type of aids, I do not have a limp either. 

What I do have is 2 badly deformed and very painful feet which have been operated on many times, one of my toes has been removed too. I have 2 badly dislocated, fused, and painful elbows along with heart problems.

 A few times people have come across to our car but thankfully my Mum and or Dad have been there to help me. 

A few people have said to me it is not very obvious something is wrong with me and if I had something to show that I have a disability and autism it would be much easier to believe and accept me. 

When my Dad shared with me the sunflower lanyards I was of course delighted and really grateful there was something to wear to help me show I have autism. Unfortunately, since wearing my lanyard I have had many stressful and sad experiences because of funny looks, people whispering to each other, and I’ve seen nobody is bothered I’m wearing a lanyard either and doesn’t seem to be aware I may need extra help and support….

 My biggest worry here is if they do this to me, they will do it to other people which breaks my heart. I have heard many stories about people mis using the sunflower lanyards which really spoils it for people who have genuine disabilities. On a more positive I have heard many positive stories as well which I am over the moon about too.  

Thank you for reading.

Bex

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Anna’s guests this week on ‘All things Autism’ at Women’s Radio were Melanie Leahy and Julia Caro

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Anna Kennedy’s guest this week on Women’s Radio Station were Melanie Leahy and Julia Caro dropped in for a chat about Matthew’s campaign. The campaign for a full STATUTORY PUBLIC INQUIRY into Essex Mental Health Services (both in the community and in hospitals).

‘All things Autism” will be aired at 1pm and 1am every day this week.  Please see www.womensradiostation.com

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Melanie shared:

Melanie’s son Matthew Leahy was just 20 when he died whilst in state care, in November 2012.  Matthew had been sectioned for his own safety and was dead within 7 days. Since his passing, his mother has been on a journey for truth. To find out what went so desperately wrong that her only child would die.

Despite multiple investigations and reviews over the last ten-year period Melanie says she still is no closer to the truth. Those documents have gone missing, documents have been falsified, important evidence destroyed. That staff have never been interviewed under oath and nobody has been held to account for any wrongdoing. Worse of all Melanie says that throughout this ten-year battle, others have continued to die.

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Julia shared:

Julia’s son, Chris Nota just 19, being another unexpected, needless death in Summer 2020.  This was the second loss for Julia, who had also lost her brother in her teens under similar circumstances.

“Multiple deaths under a failing mental health system continue needlessly – not just in Essex, but across the nation. “

“We really want to see this area of medicine move into line with state-of-the-art science and create safe and good outcomes.  We can do this by looking back on the failings made in recent years in both hospitals and the community. Both needing a clear and honest investigation, where we can confront preventable issues which must now be openly acknowledged. We believe that the knowledge is now there and that we can revolutionise this dark, dusty area and prove that good outcomes and safety are not an impossible dream”.

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Julia and Melanie both shared:

“Nadine Dorries, Minister for Mental Health and Suicide Prevention has commissioned a limited independent inquiry into hospital deaths, in a limited area within Essex.  This inquiry has no power to compel witnesses to attend or power to call for documentation to be produced. We can move no further forward unless it becomes a full statutory public inquiry and brings in community mental health services too.”

Julia and Melanie met through Matthews Campaign and their joint realisation that SEND is very much at the heart of the issues that have been faced in Essex.

“The SÉND failures that many have experienced are leading to too many of our children going into an adult mental health service – that is not fit for purpose.”

“We need the support of our community now to change this.”

“The SEND world has responded with great support for Matthew’s campaign and have told us that we must succeed. It is such a huge responsibility that we take so seriously.  We have appreciated their support and solidarity as we have pushed for this inquiry.”

“We must have a STATUTORY PUBLIC INQUIRY into Essex Mental Health Services commissioned without further delay.”

“Please support Matthews campaign by signing and sharing our petition – to help us raise national awareness and remind the Government that we will continue to call for the Truth, Justice and Accountability needed to lead to meaningful change within mental health services in Essex and across the nation.”

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Please sign Julia and Melanie petition:

“HOW MANY MORE MUST DIE? BEFORE WE GET TO THE TRUTH. NO MORE #coverup.

Our kids are dead or damaged – we fight to save yours. Raped, abused, murdered, drugged, ….in modern day UK. It must be stopped NOW !”

Please help by adding your name. Our goal is to reach 100,000 signatures and we need more support.

You can read more and sign the petition here: http://chng.it/XD2N2NKZdc

Thanks!

Melanie & Julia

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Link to Julia Caro and her charity website: Send The Right Message

Connect with her on Social Media

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Link to Melanie Leahy #matthewscampaign website: Cure Mental Health

Connect with her on Social Media

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Bigotry Starts At Home – an article by our Ambassador Paul Isaacs

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The psychology all bigotry is I believe were we need to start in one’s understanding of the bigger picture of what is going on, if we look a person’s caregiving and social environment at an early age – their core belief systems and how they have internalised information with regards to difference  and how it then perceived as a person develops.

The basics of what a caregiver supplies their children

Bigotry Is Learnt Not Innate  

The reduction and dehumanisation of person based on negative association with difference can be based on habitual, psychological belief system for the caregiver themselves and or the person’s environment, this is not only projection (of a false belief) but on a unconscious level and communication that the person is running on the actions of perceived self rather than connected.

This can cause what I call a generational over-hang between each new generation in which ideas and thus actions of bigotry are understood, internalised and objectively and rationally reasoned out. It can be a slow process but if the person is willing to self-reflect on their own artificial bias’ this can hopefully break the cycle.

The Origin Is The Key 

When a human being is born we are thrust into a world of  pre-existing and overwhelming ideas that are sadly ego driven, however a baby nervous system is “naked” to this specific type of filtering and understanding. It is from this that human beings whom at upon “othering” as a normal are learnt and taught these behaviours through their psycho-social environment. 

Conclusion

By recognising this simple but profound fact that no one is born is born with an idea of hate or division is the way in which we further look upon the human race as collection of people that is non-hierarchal an if judgements are to be made it must be in rational, objective and balanced way.

Be the change you want to see.

Paul Isaacs 2021

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NDA Awards 2021

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A huge congratulations to our two Ambassadors Giuliana Wheater and Harvey Price who have both been shortlisted for NDA Awards 2021!

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Watch the video for our recent workshop – hosted by our Ambassador Paul Isaacs who talks about Autism and Information Processing

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Click here to watch this

 

 

 

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999 Instant Relief for Autism and ADHD 

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An article by our Well-being Ambassador Giuliana Wheater and her video!

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Discreet, easy gentle massage and acupressure to use anytime!

We are going through so much at the moment as a global community coming through the pandemic and more recently our young people have been really sorely tested. Not only have a large percentage of them had to sit exams when they have missed out on so much of their learning, but they are also continually transitioning through endlessly changing and often confusing rules and regulations around coming out of lockdown.

This has had the highest impact on those who are autistic, have ADHD or who are neurodiverse. Waiting lists to even GET a diagnosis now delayed by 3-5 years due to Covid (I know maths is not my strong point, but I thought Covid had lasted 16 months so far …?). Many parents have just given up and are not even attempting to fight go diagnoses and EHCP’s which is saddening and shocking.

So, what can we do to help them (and ourselves) in the meantime? Well in this week’s YouTube video I share very discreet, easy peasy, gentle self-massage and acupressure for those times when we feel ourselves building up, getting frustrated or angry, not being able to concentrate or function clearly or feel like we cannot cope. They can all be self-administered so there are no touch issues to worry about.

These tips can be shared on a friends and family basis family but also in therapy or zoom sessions (if you are qualified) where you can invite the kids to mirror you. It is way more self-empowering anyway and encourages the kids to develop awareness of when things are becoming too much, have the tools to use when that overwhelm starts to build and to be able to self-manage and self-regulate.

It is all super discreet and can be used anytime and anyplace. These 999 techniques will bring immediate calm, grounding, clarity of thought and focus. So have a good week everyone and try not to worry too much if you can as we try to emerge from lockdown and this very strange academic year comes to a close. Just be fantastic you, with lots of tools at your disposal to take charge of your own mental health!

Take good care, Lots of love everyone, Giuliana

Author, multi award winning therapist, Children’s University.

https://www.therapiesforspecialneeds.co.uk/

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Anna’s guest on ‘All things Autism’ at Women’s Radio was Rachael Williams

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Anna Kennedy’s guest on Women’s Radio Station was Rachael Williams .
‘All things Autism” will be aired at 1pm and 1am every day this week.  Please see www.womensradiostation.com

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Rachel shared:

It was truly an honour getting the opportunity to speak with Anna discussing all things autism and our families journey. 

Everyone I feel has a story to tell as no ones journey is the same, and when you have a non verbal child or children you really do become the voice for the voiceless but as time progresses you realise that whilst our children who grow to be adults may struggle with their voice parents and care givers seem to also be over looked and it’s great that Anna keeps this in the forefront going forward. 

It’s important for me as a mother of 4 children, 3 of which are on the autistic spectrum to keep our journey 100% transparent because no one can actually prepare you for what obstacles that may come your way, but at the same time no one also told me how much we would appreciate and celebrate the wins that are so small to other people yet so big to us! 

Anna’s take 5 campaign is very pivotal and very important and I often forget to take that advice and act on it but my advice to anyone would be to take 5 minutes each day for yourself because you as the main care giver are the back bone of the family and you are needed more than you realise at times. 

I hope i get the opportunity to speak to Anna again because with a journey such as this one you feel like you barely scratch the surface. We can’t change the world for our children but it’s the small things that make a huge difference which is why I wrote my books. 

I didn’t want my children to grow up and say “we didn’t get a chance to read books with children like us in them”- so I changed that, no child should feel ‘less than’ no family should feel ‘less than’ and we often do because there simply is not enough services, products, accessibility for SEN children.

The books have I written are not even on white paper- the paper is a tinted paper because i wanted to make books accessible and different ability friendly, for instance people with eye conditions and dyslexia can read my books more comfortably because we changed the colour of the paper- as I say, it’s the little things that matter, make a huge difference and make people feel ‘NOT LESS THAN’,

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‘The Doctor Will See You Now’ by Dr Amir Khan – A book review by Beverly Guest our Charity Champion

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I first came across Dr Khan watching ‘GPs behind closed Doors’ with Chris my Mother in Law one evening.  All the staff were lovely, but we both instantly loved Dr Khan, he was warm, caring, and had a lovely aura about him.  I especially loved that he was a northerner, as I am from Leeds, and born on Yorkshire day!  Northern Souls bond!

We had come across the series by mistake browsing the tv for something different to watch.  It looked interesting, let us give it a go we thought.  We were hooked within seconds.  We recorded the series just in case we would miss an episode, all the while waiting to see Dr Khan each time.  ‘Where’s our Amir gone?’ we would say until he appeared.

We were gutted when the series featuring his practice finished.  At some point later I noticed he was launching a book.  ‘I need that when it comes out!’ I told my husband Mark.  Sure enough, I got the book, and was super excited to start reading it.  Then life comes along with its busy winding road, and I have only just managed to read it.  I was not disappointed at all, and it was worth the wait.

It is my kind of book. I love how Dr Khan talks openly and honestly about his life in a GPs practice.  Each chapter is entwined with stories of some of his patients, and the day-to-day experiences of both him and his colleagues. 

It does make you realise there is ALOT more to what goes on at your GPs than just the regular 10-minute appointments we have all had.  ALOT more.  And at a time when the Country has been through challenging lockdowns, and are still in the midst of a pandemic, Dr Khans book really does make you think about how amazing GPs and the NHS are.  They are a godsend to all of us.

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Indeed, Dr Khans book is one of true admiration for his profession and colleagues, and he really does enlighten you to understand better the role of a GP.

It was so heart-warming to hear him talk about his patients in such a lovely warm manner, and having watched him on tv, I found myself reading the book ‘in his voice’ if that makes sense?  Making it even more meaningful.

The way he is absolutely honest about how some situations made him feel yet explaining how and why is important and truly admirable.

He explained the highs and lows in great detail, and as a reader a book like this has the ability to touch you in such a way that you feel sad, or actually laugh along with it. 

Indeed, I found myself laughing out loud to some parts; Dr Khan is naturally funny, and naturally calming which comes across in his patient consultation descriptions.

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Our son Christopher has Autism, ADHD, learning difficulties and other conditions, so I wondered if I had come across anything related to them in his book, if Dr Khan would cover any of these areas.

As a Charity Champion for Dr Anna Kennedy OBE and her autism Charity https://www.annakennedyonline.com/ I was extremely happy to read Dr Khan tell his story of a young special needs patient and their family, and how he had helped them.  I had the biggest smile on my face as I read that having undergone an appointment in a family’s car due to the youngster’s special needs, he vowed to seek out change at his practice.

A change that would mean reasonable adjustments were made for special needs visiting patients, going forward.  This was Dr Khans initiative at his practice, and he was able to get the whole team there on board to bring about such change, to set up a system to help those with special needs – I also felt heartened to read he enlisted the help, advice, and support from the family he did a consultation for in their car.

Speaking to the family for their first-hand experience was crucial.  For this, I would like to thank Dr Khan from the bottom of my heart.  As a special needs parent, it is people like Dr Khan who inspire and bring about change for the greater good; and I’ve no doubt the special needs community in his area are hugely grateful for his initiative.  Thank you, Dr Khan!

Dr Khan is truly an amazing advocate for GPs and the NHS.  He really does fly the flag for them all, and not forgetting that he speaks highly of his patients too.  He has been able to clearly describe how much his profession and patients mean to him, which actually makes you think about when you visit your own GP – you really are important to them, and they do truly care.  It is easy to feel like a number, but with GPs like Dr Khan around, he is most definitely making a positive change for us all.

I really enjoyed the book, and I truly hope a follow up will ensue!  A truly huge thank goodness for GPs, Dr Khan, and the NHS – where would we honestly be without them?!

Click here to purchase your copy.

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