Anna Kennedy Online – Autism Awareness Charity
Autism show – March 2022

Autism show – March 2022

Autism show – March 2022

This month’s autism show saw Aston Avery and Anna Kennedy OBE discuss the latest news regarding autism charity Annakennedyonline and also all things autism. 

Anna shared “I was happy to be back in the Gateway studio with Aston for the March edition of ‘All things Autism in Essex.  Our first guests today were one of my charity ambassadors Tess Eagle Swan alongside Lynne Barrett-Lee who is a best selling Author and novelist for The Sunday Times.. Tess lives in Cambridgeshire with her dogs, she is mother to 2 and has 1 grandchild. We first met Tess when her and Kratu performed on Autism’s got Talent in London.

Tess and Lynne co wrote the book Incredible Kratu – Kratu won the hearts of the nation when he went rogue at Crufts! The amazing book is out for sale on Monday and the link to purchase is here https://loom.ly/dbb7RoQ.”

Click here to hear more

Today’s guests on ‘All things Autism” Radio was Ali Knowles

Today’s guests on ‘All things Autism” Radio was Ali Knowles

Today’s guests on ‘All things Autism” Radio was Ali Knowles​

Annas guest  on ‘All things Autism’ Women’s Radio was Ali Knowles​.

‘All things Autism” will be aired at 1pm and 1am every day, please click here to listen to these amazing shows!

Ali shared: Anxiety is just trying to protect us

I’m Ali. A cognitive hypnotherapist, CBT Practitioner and creator and lead trainer at Ollie and his Super Powers. What is Ollie and his Super Powers? Well, it’s a therapeutic model to help young and old take control of their emotions rather than be controlled by them.

Why another therapy model?

Well, I can’t read and write very well, anything highbrow or that uses long words makes me run for the hills. I feel threatened and uncomfortable by people I perceive to be smarter than me and so I presume they are judging me. But I’m far from stupid and I don’t need fixing! I believe I have all I need in side to problem solve and not be dependant on external “experts” in order to be the best me.

I spent many years training in all the different therapies I could.  I stripped them down from being over complicated and using ridiculous long words making them user friendly and empowering to the user, so they never had to feel what I felt when I needed a little help!

I could wax on about the Model but if you get what I’m saying check us out on our social media platforms to see how the Model works and where we are working.

Today I got to speak to the wonderful Anna Kennedy, and we were talking about Anxiety and the last few years of covid and everything that entails.

Let’s start with Anxiety … what is it?

Well, I see it (and so do all the kids we work with) as a little annoying bodyguard!

This little bodyguard knows you inside out and he/she/it knows everything that ever made you scared or worried as well as all the good things. The bodyguard’s job is to keep a look out while we go about our days to make sure that we are not near anything that upset, scared, or hurt us in the past.

If the bodyguard spots something he has to alert you to get you move away from it. Well, he is only a little chap so he can’t leap out and defend you, so he lets you know via physical symptoms ranging from your tummy churning to your heart beat speeding up, to getting breathless etc. (all natural bodily reactions to the fight or flight response).

If you take note and move away from the perceived threat, the bodyguard stands down and you settle down. So, if it’s a physical threat … run or fight your way out of danger and the symptoms will stop.

The problem comes when the threat is not physical, its emotional.  For example: ‘how do I get the authorities to listen?’, ‘how do I keep my kids safe?’ All those worries we have for ourselves and our families.

You can’t run away from an emotion and so you squash it down and battle on. But after a time, you notice you’re exhausted, snappy, can’t sleep, can’t think and so on.  That’s the effect of anxiety taking over and exhausting you.

That’s a problem enough for you and can make you very poorly, despite your best swan impersonations.  Your children, all children, but especially those on the spectrum, they have a built in sixth sense that detects non-verbal cues so they will sense your anxiety and that’s when they get anxious because you’re their guide through life.  They totally depend on you to keep them safe, and if they sense your anxious then they get terrified!

So, what can you do? Take a look at this image. Imagine this on the ground.

Step 1. step in to the middle circle (Take Control) and have a think about that what do you have complete control over? The truth is very little, none of us do. Oh yes I can choose what to wear or eat.  I can choose what I want to do but I can’t control others’ thoughts or actions. But this is a nice place of total control and just stand their taking a few deep slow breaths and enjoy the sensation of being in control.

Ali Knowes

Step 2. now step in to the next circle (Some Control).
Again, think about what you have some control over … (again note – not a lot, really)
Step back in to the centre circle and allow complete control to feel what ever it feels for you … that safe place ….

Step 3. step in to the outer circle (No Control).
Things like the weather, politics, other peoples’ thoughts or actions.  Notice how it feels to stand in this circle .. I’m guessing its not great!

Before you step back into the centre and feel safe again just ask yourself “can I do anything about the things in the No Control circle?” Chances are .. not really … so why spend time and energy there?

Best to deal with stuff in the third circle from the safety of the first two, where you are in control, and you can see and think clearly and choose your battles and make decisions that are right for you and yours!

Another lovely simple thing to do is to anesthetise the bodyguard!

Stand with your hands by your side feet shoulder width apart.

Take a slow deep breath in to the count of 7, raising your arms to the side slowly as you do with them being parallel with your shoulders when you get to 7.

Hold that breath for a second or two and then begin to very slowly exhale lowering your arms to your side as you do and counting to 11 as you do, not releasing that last bit of air till you get to 11.

You should feel a little lightheaded if you do it slowly enough! Repeat as necessary.

How will this help? Well, your body is focussed on counting, and your arms and your breathing, not on the bodyguard and anxiety.  So, its a pattern interrupt.

It slows everything down and clears your head, it breaks you out of the fight or flight response.

Simple technique that works really well for kids and adults.

We have Ollie Coaches all over the UK. They are highly skilled at helping young and old take control of their emotions, work with them, help them. No therapist can change anything in your world, like covid or other people but we are awesome at giving you the tools to take charge of your super powers so you can think clearly and trust your judgement, communicate clearly and be heard and help those around you do likewise.

And you know, most of the time the things you get anxious about are things a much younger you got anxious about. Your bodyguard doesn’t know your older and wiser and maybe don’t need to worry like you did many years ago….

If you need a chat, get in touch,

If you would like to join us and train as an Ollie Coach to help us help others, get in touch.

Entry criteria? Oh, that’s simple … no previous required and we aren’t looking for degrees – tell me why and I will teach you how.

Click here to email us

Click here for our website

Our social media links are below:

New announcement – Women’s Radio Station

New announcement – Women’s Radio Station

Women’s Radio Station has won the “Best Radio-Based Women’s Mental Health Support Service – UK”

We have got a new announcement!

Women’s Radio Station has won the “Best Radio-Based Women’s Mental Health Support Service – UK” award in Global Health & Pharma Mental Health Awards this year! We are so proud to support this vital industry and its exceptional practitioners.

This is fantastic news and a well-deserved achievement for all the team and our family of fantastic presenters, so we would like to say a big thank you to all.

Today’s guests on ‘All things Autism” Radio was Lisa Slater

Today’s guests on ‘All things Autism” Radio was Lisa Slater

Today’s guests on ‘All things Autism” Radio was Lisa Slater

Annas guest  on ‘All things Autism’ Women’s Radio was Lisa Slater.

‘All things Autism” will be aired at 1pm and 1am every day, please click here to listen to these amazing shows!

Lisa shared:

I was very excited to have the opportunity to speak to Anna Kennedy about Paediatric Autism Communication Therapy (PACT) https://www.pacttraining.co.uk on her radio show All Things Autism. It felt very exciting given Anna’s fantastic reputation for raising Autism awareness and her promotion of Autism Acceptance and understanding nationally and internationally. I enjoyed Anna’s company and, despite my initial nerves, felt I could’ve chatted all day 🙂

I also enjoyed the time and space to chat about my speech and language therapy (SLT) career to date and how I came to work supporting autistic children and their families. My hope was that some of the discussion may help families on their journey from diagnosis to therapeutic input.

I currently work within the private sector following my NHS contract finishing at the beginning of the Covid-19 pandemic. A family I was working with asked me to consider working with them independently – it was something I hadn’t considered before and at first made me have a bit of a ‘wobble’ – I had always worked within the NHS.

Since then, however, my private caseload has grown and I value working within the independent sector as it provides the luxury of time to support families to a level I feel can make a difference. The NHS does an amazing job in many areas but unfortunately local budgets do not always allow SLT to be as long-standing and intensive as families sometimes feel they need.

About Lisa:

Lisa received her First Class Bachelor’s degree in Linguistics and Spanish in 2000 and her Master’s degree in Speech and Language Pathology with Distinction in 2005 from Newcastle University. She has since practised speech and language therapy (SLT) in a number of settings including: mainstream and special schools, the North East Regional Cochlear Implant Programme, community clinics and into family homes. She has also worked as a Guest Lecturer at Newcastle University to SLT BSc/MSc students.

Lisa specialised in working with deaf children for many years and initially began working with autistic children in a specialist charity provision. Her role then involved maximising the communication opportunities for the children and considering ways of integrating therapy targets into the curriculum. She became particularly interested in how to consider the subtle ways that autistic children can communicate and how to optimise this within their environment and people around them.

This is how she became involved with PACT – she immediately became interested as it was an intervention that felt like a good fit to her philosophy of therapy. It involves parents/carers and empowers them to become their own children’s expert and very much supports relationships.

She has been involved within the field of Autism ever since from the point of initial diagnosis to therapeutic input. In 2019, Lisa delivered therapy as part of a randomised control research trial – the Paediatric Autism Communication Trial – Generalised (PACT-G) http://research.bmh.manchester.ac.uk/pactg/AboutPACT-G/ During this time, PACT therapy was delivered to children within their home and schools in parallel to consider how therapy can be transferred across settings.

In 2020, she also delivered parent groups as part of another research study.  During this time, Lisa worked with groups of parents of newly-diagnosed autistic children to provide information on how Autism can present differently amongst children including signposting to organisations families may find useful. Many families reported receiving an Autism diagnosis for their child but very limited advice or input followed this.

Today’s guests on ‘All things Autism” Radio was Lisa SlaterWhen Covid-19 restrictions hit the NHS, Lisa’s groups were delivered online which some families preferred as it fitted more easily into the demands of family life.

Online interventions have now become part of everyday working life for many SLTs.

Lisa currently works as part of a diagnosis service, Neurospectrum, specialising in Autism and Attention Deficit Hyperactive Disorder (ADHD) assessment https://www.neurospectrum.co.uk . They receive commissioning from local authority for certain individuals with increasing vulnerability and needs.

Lisa was attracted to working within this organisation as most team members have lived experience of Autism or ADHD. Lisa’s husband has ADHD and has some other family members undergoing a neuro-developmental assessment. Neurospectrum felt like a unique service to work for as it offered compassion to families from professionals with personal experience.

Lisa currently offers private SLT sessions to families delivering a range of therapeutic interventions including PACT. She is part of an SLT collective called Cascade http://www.cascade-therapists.co.uk  who came together following their involvement within the PACT team to provide the therapy to families within areas where the therapy is not currently offered within the NHS care pathway.

If PACT is something that interests you contact the main PACT office on info@pacttraining.co.uk or the network Lisa works with hello@cascade-therapists.com  for a no-obligation chat. Therapy can be offered either face-to-face or via video link.

In addition, PACT are co-ordinating a free webinar  https://www.pacttraining.co.uk/autism-care-pathway-webinar-2022 which invites professionals, parents and carers to the new Autism Care Pathway Webinar on 26th April 2022. This webinar will be presented by Professor Jonathan Green (Professor of Child & Adolescent Psychiatry in the University of Manchester, UK, and Honorary Consultant Child & Adolescent Psychiatrist at the Royal Manchester Children’s Hospital and Manchester Biomedical Research Centre) and Dr Catherine Aldred, expert consultant SLT whose work formed the basis of 20 years of world-leading research trials and collaborative work.

Lisa is most passionate about empowering parents to recognise their own expertise regarding their child as, along the way, parents can sometimes report feeling overwhelmed by advice from a range of people (including Google!) Due to this, families can lose their confidence in their own knowledge of what might work for their child and family. She always advises parents / carers that ‘nobody knows your child like you do’.

Anna and I share the same ethos of always being kind and promoting anti bullying within the community.

Today’s guests on ‘All things Autism” Radio was Brian Bird

Today’s guests on ‘All things Autism” Radio was Brian Bird

Today’s guests on ‘All things Autism” was Brian Bird

Annas guest  on‘All things Autism’ Women’s Radio was Brian Bird .

‘All things Autism” will be aired at 1pm and 1am every day, please click here to listen to these amazing shows!

Meeting Anna

I first met Anna in 2012 at the London Autism show. I listened to a very empowering talk by her and was impressed how she challenged professionals and stood up for herself. I wrote to Anna afterwards to thank her, and Anna was one of the first people to inspire me to become an advocate and fight for my son’s rights at school.

Since then, I have been a big fan and follow Anna’s pages on Instagram and Facebook.

Anna and I share the same ethos of always being kind and promoting anti bullying within the community.

About Brian

I am Brian a late diagnosed autistic at the age of fifty.

I currently run a page on Instagram called: Autism Support Community (@autism_support_community)

I am a writer and blogger, autistic self-advocate, and anti-bullying campaigner. I do talks at The London Autism Show on bullying, mental health, and diagnosis.

I did a talk for the NAS at their Leeds Autism and mental health conference.

Twice yearly talks at The Michael Rutter Centre, Maudsley for parents of newly diagnosed autistic children.

Took part in the filming, experiments, and research side of the BBC Horizon television documentary ‘Living with autism’ featuring Uta Frith.

My son and I are second degree black belts in Taekwondo, a martial art similar to Karate.

I wrote my autobiography over 7 years at the City Lit, hope to publish it in the near future.

I am an avid naturalist, photographer, and love to travel.

Shows also at Birmingham and Manchester.

Childhood

I was diagnosed very late in life at the age of fifty and had no idea I was autistic.

As a child I was often bullied by peers and teachers for being different. Much of my time was spent on my own and being engrossed in my special interests.

I escaped bullying by truanting and became a bit of a vandal, street kid, and missed out on my education due to my difficulties.

My father heavily rejected me and after my mother’s death when I was eleven, I became mute and unreachable.

I struggled to fit in and even though my father was a psychiatrist he did not have a clue how to help me.

There was talk of sending me away to an institution, in those days little was known about autism.

My grandfather was my hero, and he was always kind and supportive towards me. We would walk for miles together in the countryside, play chess, and he taught me how to stand up and defend myself against bullying.

Mental Health and Trauma

Due to my traumatic childhood and relentless bullying, I soon developed severe bouts of depression and crippling anxiety. Also eating disorders and suffered terribly with insomnia.

Later I found out I was dyslexic, suffered from chronic fatigue syndrome and probably dyspraxia.

When I was nineteen my father died, and I experienced a period of being homeless in London. It was a downward spiral as I entered into deep depression and became isolated from society.

I was then admitted into a psychiatric hospital as a voluntary patient and spent 9 months or more trying to recover. It was a frightening place to be but also the best place as I met many kind and creative people from all walks of life.

On leaving hospital I experienced being homeless again and would sleep under the staircase of my local Samaritans office.

I later got married and lived in Brazil for a few years where my first son was born.

I started my own business as a landscape gardener and was quite successful, employing staff and covering the whole of London.

I had to stop due to an accident at work, deteriorating mental health and then became a carer to my youngest lad who was shortly diagnosed with autism.

Diagnosis

It was through my son’s diagnosis that I started to see my traits. I attended a training course for parents of newly diagnosed children run by the NAS and during that course I stood up one day and announced; ‘I am autistic’! It was a very surreal experience meeting myself for the very first time.

I am pro diagnosis as it can be a great tool to help us gain what little support and help is out there. A diagnosis can give us closure on traumatic lives and empower great self-awareness and self-acceptance.

To start the diagnosis process, it is a good idea to complete one of those online evaluation tests

I completed the AQ test: “Autism Spectrum Quotient (AQ)” https://psychology-tools.com/test/autism-spectrum-quotient

Then book a double slot with a good and open-minded GP, choose wisely as GPs are not that well trained. Go well prepared, write down questions and take medical and professional reports. Be aware that for females it can be very difficult and there is a danger of being misdiagnosed. Attend with a trusted friend or family member as the whole process can be stressful.

The National Autistic Society has pages of information you can print, even notes for the GP to help them manage your diagnosis request.

Hopefully then you will be referred to a psychiatrist who may then refer you to a diagnosis centre. Waiting lists can be long and in my case my diagnosis took three long hard years of battling. I was blocked at the second stage, but finally got a second opinion and was diagnosed at 50 in 2011 with Aspergers Syndrome.

Remember a diagnosis is not just a piece of paper, it is a life and can help others to grow and transform. I did more in ten years than I did in fifty as my diagnosis empowered me to research and understand myself better. I was able to break that cycle of trauma and stop blaming myself. I finally lay to rest my past and moved on with my life with greater confidence and peace of mind. I became the person I always wanted to be, and my diagnosis helped me gain access to housing, education, and other support.

Writer, blogger, speaker, and autistic self-advocate

I cannot change the past or catch up on lost years due to being invisible. However, it is important to note that the cycles of trauma can be broken and used to help others, to support and educate others.

My work and kind ethos allow me to reach out and support many vulnerable people in our community.

As a parent I know those feelings of being lost and overwhelmed. There is no manual when it comes to autism and besides, we are all unique.

I say this, be kind and maintain an open mind and heart. Autism can be disruptive and exhausting, but also rewarding, do not compare our children with non-autistics, we have our own way to be and to process information.

There is much support online, choose wisely. Be aware social media is a volatile place. Choose pages and groups that build you up and do not police you. Groups that are moderated well and are antibullying in nature.

My own page is inclusive, open minded and welcomes parents, professionals, and autistics alike.

I share information on education, housing, autistic rights, bullying, mental health, diagnosis and even my personal photos. Humour is a big part of my work and I share and support other advocates’ work.

I believe my page is unique and my ability to stand away from the crowd allows me to keep an open minded and warm-hearted ethos. It truly is a safer space, where people can visit, breath, laugh and be informed/listened to.

My page Instagram page is: Autism Support Community @autism_support_community

Being a father and carer

Nothing gives me greater happiness than being a father and carer to my lads, one on the spectrum. It is my calling and my past experiences no matter how painful have helped me to mature and be a wise loving father.

I have a very close bond with my sons and am so proud of how they have succeeded and grown.

One of my tips is Lego and board games that teach many skills and stimulate the parts of the brain that deal with motor coordination and speech.

I rescued my youngest lad from school and have been home educating for 6 years. I strongly recommend home education for the more vulnerable child lost in the system.

Since my son left school, his meltdowns stopped, and his anxiety disappeared. This has allowed him to flourish. Bullying destroys lives into adulthood so that stopped and now he has many friends while studying for his A levels.

Home education is a great option for some children, and it can literally save lives. It is a lifestyle change and can improve the health of all the family, who needs the stress of fighting schools?

For further expert information on home education please contact: “Ed Yourself – The Home Education Consultancy” https://edyourself.org

Martial Arts training

Black Belt signifies – ‘The wearers proficiency in Taekwondo and their imperviousness to darkness and fear’.Brian Bird

I enrolled my son at Taekwondo classes 8 years ago to help him cope with bullying.

It was the best thing I ever did, and now we both train every day.

Last July we graded to our second degree blackbelts together, a 5-hour marathon of twelve patterns, sparring, board breaking, and Korean theory. I am the oldest to grade to black belt in my club, so it is never too late to learn.

Martial arts are brilliant for autistic people, disabled and for learning self-defence, and greater self-awareness.

The choice of coach is essential, and I am lucky to have two coaches who are inclusive and anti-bullying in nature.

The classes are also about having fun and supporting each other. Students learn kindness, discipline, respect, and integrity all the way. Aggression is not part of training, and the best form of self-defence is to not get into dangerous situations in the beginning.

Students lose that fear, the fear that bullies look for in vulnerable people. Making friends and working as a team give a sense of belonging for autistic people.

Martial arts develop confidence, assertiveness, co-ordination, and physical/mental strength.

Choose which martial art suits you and choose a coach that is kind and inclusive.

Mental health tips

There is a mental health crisis exacerbated by the pandemic and lockdowns.

Managing mental health is essential for autistic people and parents.

Anxiety and depression can be managed and greatly improved with regular exercise. Walking is a great way to bond with our kids and also help parents to destress.

Insomnia can be crippling and lead to a breakdown in mental and physical health.

Changing habits, diet, screen time and improving exercise can improve our sense of wellbeing as well as improve insomnia.

For invaluable mental health please follow Dr Julie Smith on Instagram, Facebook or Tik Tok. She produces excellent videos and has just published a bestselling book called, ‘Why has nobody told me this before?’. I have read this book and it is excellent, as it breaks down mental health issues and explores ways we can improve and manage it.

For Autistic run pages I recommend the following friends & pages, who are exemplary in their conduct and ability to educate and inform on all aspects of autism.

  1. Charlotte ‘The Spectrum Girl‘ on Instagram.
  2. ‘Summer Farrely’ on Facebook and also on Instagram as ‘Autistic perspectives3
  3. .Callum on Instagram, @adulting_with_autism
  4. Dr Julie Smith psychologist and author on Facebook, Instagram and Tik Tok.
  5. National Autistic Society better for parent resources.
  6. ‘Peaceful Life peaceful mind’ for mental health on Instagram and Facebook.
  7. ‘The Neurodiverse Woman’ on Facebook.
  8. ‘Michael McCreary – Funny, You Don’t Look Autistic.’
  9. ‘Spectrumy’
  10. Best of all….’Annakennedyonline’
  11. My page on Instagram: Autism Support Community: @autism_support_community
  12. AQ online test for autism: “Autism Spectrum Quotient (AQ)” https://psychology-tools.com/test/autism-spectrum-quotient
  13. “Ed Yourself – The Home Education Consultancy” https://edyourself.org
  14. The London Autism show, visit hub one where all the autistic speakers are. I will be doing a talk there in June 22 on getting a late diagnosis. 

Shows also at Birmingham and Manchester.

Pershy Mgadamika and Mala Thapar speak to Anna Kennedy on Women’s Radio

Pershy Mgadamika and Mala Thapar speak to Anna Kennedy on Women’s Radio

Pershy Mgadamika and Mala Thapar speak to Anna Kennedy on Women’s Radio

Annas guest at Women’s Radio on Monday 17th January at 1pm on ‘All things Autism’ Women’s Radio were Pershy Mgadamika and Mala Thapar .

‘All things Autism” will be aired at 1pm and 1am every day, please click here to listen to these amazing shows!

About Pershy

One of our 2 guests today is Pershy Mgadamika, an African woman who’s lived in England since her late teens. She is also Ethan’s mum, one of our AKO ambassadors. He is 19 years old black and autistic. They live in Essex.

I am sad - by Pershy MgadamikaPershy holds a BA (hons) in Special Education studies. She has worked in education and community settings with autistic people. She attributes her experience as Ethan’s mum as most prized, it makes her relatable to people who are in the same situation as herself. In 2010, with a grant from Southend council, she set up a support group for African and Caribbean families with special needs children.

The support group was run at a local sure start centre on Saturday mornings. It ran for 9 months. Her aim for the group was to empower the parents in her community with information and advice of services that impact most families looking after a special needs child.

Here’s how Pershy describes herself…..

My star sign is Taurus, l can be very stubborn. My stubbornness has been an advantage getting services for my son, Ethan. Ethan is 19, black and autistic. We live in Essex with his dad and sister.

I love summer and colourful clothes with my big necklaces and earrings. Just the thought of long days, blue skys, bbqs, a glass of rosé and being in the garden puts a smile on my face.

I first met Anna (and the ladies) in 2016, l loved how we were looked after. The atmosphere was amazing. Ethan was relaxed, speaking to new people, laughing and looked genuinely happy. Afterwards he said to me how much he loved being part of the group he was going to come back next year, and he did. And has performed as a dancer at loads of events for AKO.

Looking back, this journey hasn’t always been easy. There was a time when we were alone trying to figure out how to navigate the complex and emotionally taxing system. We quickly learnt to fight, so that Ethan could get what he needed to get the right services provided for him. I remember being told he had to wait a year to get a nursery place at an autism resource base since he was a September baby. There was no social media back then, no one could help me. I managed to convince the school to take him despite his age.

The victory was short lived l had to apply for a statement (EHCP) for him. No one had told us this. Soon as something is in place, you quickly learn, there’s something else that is needed, it is never ending . Yet my experiences have taught me to help others get what they need as well. In this “special needs jungle” one needs allies, people that will answer your call when nothing is working.

People that will not judge you when you want to vent, cry or fight the system. My biggest joy is knowing strangers can call me and l will always support them, especially those from my community because we understand each other. We understand how as a minority there are certain hoops we have to jump.

The past year has been the most challenging, l have long Covid. I am the percentage of the population that hasn’t been able to fight off this virus entirely. As a parent to an adult-child with autism, unfortunately my pain and less energetic self can wait, autism challenges can not. I know loads of parents in a similar situation to mine; if not worse, yet we still have to care for our children. There’s no day off from autism. No day off from inequalities in our system. We fight for another day.

About Mala

Mala Thapar is a British born Asian with two sons who have ASD, her eldest son is age 17 and he is enthusiastic about a career in Media.

MalaIn 2011 she reached out to Anna after watching her on the ITV news promote the Give Us a Break campaign. After meeting Anna, Mala was overjoyed when she was offered a voluntary role as a Charity Champion which has been an incredible journey; she is now the Culture Campaign and Communications Officer at AKO.

More recently she joined The Garwood Foundation who promote the care, welfare, interest, treatment, and advancement of education of adults and children having cerebral palsy and other profound, multiple, acquired, or other disabilities, as a Trustee.

Mala is also a board member for a foundation of Black and Ethnic Minority Community Organisations that network across the country. Alongside these responsibilities she is also participates in various networking panels for community organisations to preside equal representation and based on intersectional needs and discrimination.

Since having her own children and hoping that microaggressions and bias treatment would change, which they have not as over many years she has continued to observed inequalities and systematic disadvantage facing disabled people from communities; and how inclusivity and diversity issues related to her own personal lived-in experiences.

Mala shared:
“Misunderstanding cultural differences can compound systemic racism, so having two protected characteristics (race and disability) rather than just one is a double-edged sword. On mainstream media the series of short films “Small Axe” that was aired on the BBC, there was one episode on Education, which covered and revealed how black children have the odds stacked against them and whilst this was based on a true-life story, this happens now in 2022, but is simply ignored.

The response the SEND child receives could vary depending on the setting and the child’s, and the teacher’s, individual perceptions. Misunderstanding cultural differences can compound systemic racism, so having two protected characteristics (race and disability) rather than just one is a double-edged sword. It was clearly obvious that voices are not being heard because of institutional racism, whichever way it’s covered up. Disability, coupled with ethnicity, can mean double the victimisation, bullying, and/or disempowerment.

Ethnic communities are often referred to as “hard to reach” but are only hard to reach if there are insufficient efforts made. Cultural stigmatisation and unnecessary family pressure are just additional strains placed on parents that are unjustified and unfair.

After years of frustration of this long-standing issue of the inequalities faced by ethnic communities; in between the 3rd and 4th tribunals of Summer 2020 where yet again I was fighting for my eldest son’s placement, I noticed an alarming discovery whereby I had spotted since 2017, there was missing data recorded for SEND tribunals for ethnic communities. I tried to obtain the reasoning and the logic behind and after contacting the Ministry of Justice was given a weak response. I was frustrated that my FOI request was never properly answered, which gave an impression the justice system is withholding information.

During this period, I was networking with various individuals and subsequently, the Runnymede trust requested a call out for evidence following the ridiculous Sewell report that was published after the race disparities report issued by the Government. The information published, led by Dr Tony Sewell, who publicly declared he “does not believe Britain is institutionally racist”, within his 258-page report there was no mention of disabled families within this “report”, but since the race report was published, Sewell stated that the commission did find evidence of ‘persistent discrimination’ despite the narrative.

Finding the racial minority voices in SENDThrough social media I met Marguerite Haye who is an editor at SNJ. I shared my outrage and findings with Marguerite, and we worked on an article together after conveying our individual experience and networking of other parents in our communities, specifically in education where there are clear disparities.

Special Needs Jungle published this in November 2021 including links to the missing tribunal stats; there will be some further collaborations to this: Finding the racial minority voices in SEND”.

Autism and Cultural Issues Campaign – Survey

Anna Kennedy Online launched Autism and cultural issues campaign a few years ago called “#Togetherweareacommunity” which we shall continue to highlight.

Anna Kennedy OBE Autism Campaigner throughout the years has spoken to many families who are experiencing cultural stigmatisation, and this is unnecessary family pressure and an additional strain placed on parents that is unjustified and unfair. We want to support everyone and promote inclusion and reach out to families affected. We are all equal.

Please click here to complete this short survey and share with friends and family.

#Togetherweareacommunity

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