Anna Kennedy OBE interviews BBC Radio 1 Teen Hero of 2018

Anna Kennedy OBE interviews BBC Radio 1 Teen Hero of 2018

This week Anna Kennedy OBE’s guest on Women’s Radio Station ‘All Things Autism’ Show is one of her new young Charity Ambassadors Siena Castellon. Siena was one of the BBC Radio 1 three Teen Heroes of 2018. The outstanding young winners have all proven their dedication to helping others through selfless, brave and exceptional achievements.

Anna and Siena’s interview can be listened to again online at 1pm each day this week on www.womensradiostation.com

Siena shares:

“I was diagnosed as being autistic when I was 12. My autism diagnosis was welcomed with open arms. I always knew I was different, I just didn’t know why. I finally had an explanation. My diagnosis allowed me to understand myself better. It also made me realise that I was not alone. Finding out that there are other people out there who are like me was very comforting and empowering.

I recently signed a book deal with Jessica Kingsley Publishing to write a survival guide for autistic teen girls. I am really excited about this opportunity, because I wish there had been a practical and informative book written for autistic girls when I was growing up. Most of the existing books are written by neurotypical adults and are written for parents or for autistic boys. I will be covering topics, such as masking, social interaction, managing sensory issues, hygiene, self-esteem, mental health, dating and navigating social media. I am thrilled that the book will be illustrated by a female autistic artist whose work I love and that the foreword will be written by Dr Temple Grandin, someone who I greatly admire. It was important to me that I put together a female autistic team, which is not as easy as it may sound.

In addition to being an autism advocate, I am also an anti-bullying campaigner. I’ve been bullied at school for most of my life. There have been occasions when the bullying was so intolerable that I’ve had to leave the school. In fact, I’ve had to leave three schools because of severe bullying. Being bullied has a devastating effect on you physically, emotionally and mentally. At one point I was so traumatised, I was diagnosed with bullying-related PTSD and was home educated.

For me, the most difficult part about being bullied has been having schools look the other way or worse yet, blame me for being “different” or for not trying harder to “fit in.” It’s also hard when so many bystanders see the abuse and either ignore it or join in. I decided to become an anti-bullying campaigner when I learned that my autism-related bullying experience wasn’t unique to me, that 75% of autistic kids report being bullied. Last year, I served on the Diana Award National Anti-bullying Youth Board, which gave me a national platform through which to share my story and raise awareness of disability-related bullying.

I recently launched my Neurodiversity Celebration Week campaign which aims to encourage schools to recognise and celebrate the strengths of their neurodivergent students. As a student who is autistic, dyslexic and dyspraxic and has ADHD, I know how demoralising our school day can be. The school day revolves around reading, writing and spelling, skills many of us really struggle with. We are often made to feel like failures. Many of our classmates assume we’re not smart, because we have special educational needs.

I want to flip the narrative so that schools stop focusing only on the negative aspects of having learning differences, to also focusing on the strengths. It’s important that SEN students realise that just because you’re not acing school doesn’t mean you’re going to be a failure and will have no career prospects. Many successful entrepreneurs are dyslexic, many people in media and entertainment have ADHD and many scientists, mathematicians and computer programmers are autistic.

Although I just launched the campaign, I currently have 85 schools and over 51,600 students taking part this May 13 – May 17. I also have the support of 19 charities, including Anna Kennedy Online, the ADHD Foundation, the Dyslexia Association and the Dyspraxia Foundation. If you’re a parent and would like your child’s school to participate in Neurodiversity Celebration Week, please ask your school to register at www.neurodiversity-celebration-week.com.”

Homeless autistic man with tumours told he is not a priority by Cornwall Council

Homeless autistic man with tumours told he is not a priority by Cornwall Council

CORNWALL Council has today been named and shamed by autism activist Anna Kennedy OBE after the council told an autistic man with numerous health conditions that he was ‘not a priority’ for housing.

Dominic Clark Campbell, 46, has been sleeping rough on a street bench for just under a week. Mr Campbell approached Cornwall Council in a desperate plea for some support after losing his job due to ill health but was told he was not a priority.

It is a view shared by Charity Today editor and UK Charity Week founder Lee Rayment, who Added:

“The council should have a plan B, especially for those as vulnerable as Dominic. It’s people like Anna that keep my faith in humanity because right now our politicians and councils are only looking inwards, yet these are the very people employed to be dealing with this kind of thing.

“The public has been very supportive of Anna’s efforts for Dominic, and it just goes to show that if people join forces good things can be achieved. Now it’s over to Cornwall Council to show what they are about.”

Autism campaigner Anna Kennedy OBE told Charity Today:

“This man is alone and autistic, and as if that is not enough, he is living with a number of serious health conditions, including; tumours, NF1, intense headaches and skin conditions amongst many other painful symptoms. I feel absolutely ashamed of what our country is coming to, how can we treat people like this?”

Anna has since set up a fundraising page for Dominic to get him a little support, the initial goal was £500, but this has since risen to £1,400. Anna has also paid for him to have three nights at the local Travelodge in the hope that something can be sorted for him quickly.We are awaiting formal comment from Cornwall Council.

You can donate to the Fundraising Page, by clicking here.

Source: https://www.charitytoday.co.uk/homeless-autistic-man-with-tumours-told-he-is-not-a-priority-by-cornwall-council/

The Autism Podcast – Episode 6 – Interview with Anna Kennedy OBE!

The Autism Podcast – Episode 6 – Interview with Anna Kennedy OBE!

The Autism Podcast, delivered by the London Autism Group Charity, is the definitive autism related podcast. The podcast aims to improve our understanding of autism, boost acceptance, reduce autism stigma, and generate impact, transformation ideas ranging from practical everyday advice to thoughts on policy, practice, and wider socio-cultural challenges.

Dr Chris Papadopoulos talks with Anna Kennedy OBE, one of the most well known autism campaigners particularly in the UK. Anna talks about her extraordinary personal story and life including how she entered the world of autism. She then explains the various work she and her charity are involved with including schools and respite centres she set up, the Give Us A Break campaign, Autism’s Got Talent, the Autism Hero Awards and AKO Autism Expo, and her thoughts on why and how her charity has been so successful. 

Episode timeline:

  • Meeting her husband and moving to London: 3:46 – 7:07
  • Patrick, Angelo and setting up her first support group and schools: 7.08 – 30:35
  • Empowering parents: 30:36 – 41:37 / 45:27 – 48:31 
  • Cultural stigma, shame and bullying: 41:38 – 45:27 
  • Autism’s Got Talent: 48:32 – 58:20 
  • Autism With Attitude and street dancing 58:21 – 1:00:20/ 1:17:41 
  • Producing music and Building Bridges: 1:00:21 – 1:03:27
  • Burnout, building resilience, and breaking away from a strict upbringing: 1:05:30 – 1:11:20 
  • Anna’s appearance on The People’s Strictly: 1:11:21 – 1:17:40 
  • Giving hope to others and advice to those thinking of helping others: 1:21:15 – 1:23:05 
  • AKO Autism Expo, Autism Reality Experience, Women’s Radio Show and final words of advice: 1:23:06 – 1:30:43 

Source: http://theautismpodcast.podbean.com/

Dawn Assefa on Women’s Radio Station – the importance of extended family

Dawn Assefa on Women’s Radio Station – the importance of extended family

Anna’s guest this week was Dawn Assefa a mum to Hannah diagnosed on the autism spectrum and Grandmother to three autistic children. Dawn shared her experience:

I had contacted Anna few years ago as I used to present a local radio show myself called ‘The Carers Show’ and asked Anna to be my guest to talk about autism and the work of her charity Anna Kennedy Online.

Wear it for Autism winner 2013 
Styled by Phil Tarling

We spoke about an event at that time called “Wear it for Autism”, created by Anna and my daughter who has an Autism Diagnosis was selected and had the opportunity to walk the catwalk in fashion week. Anna and her team made both my daughter and me so welcome.The event gave Hannah a real boost in her confidence in crowds that has given her so much confidence ever since.

During the show I shared with Anna about Hannah’s journey since then and how Hannah attends college and her future plans, as well as how I have found my daughter’s transition into adulthood an anxious time as Hannah is keen to navigate the world on her own and on her own terms.

I am a parent who respects that my daughter has the right to independence and the right to make her own mistakes but it’s particularly scary when your child has special needs in my case and predominantly wanted to share my experience of being first a parent as well as grandparent of three grandchildren who are on the spectrum.

My grandchildren’s parents and I  feel we are at advantage in some ways, for example my children have a babysitter who understands Autism to begin with, I have learnt strategies and gained an understanding with behaviours. I shared about mistakes that I made initially, for example when asked to meetings with professionals I tended to take over the meetings, and after my many years of trials of my own getting my daughter’s needs met, I can be very direct. My daughters quite rightly want to do things their own way who stopped me from attended these meetings at first, this made me learn to LISTEN to what my children wanted from me and not presume that I knew it all, which is certainly not the case.

In my family having girls and one boy on the spectrum, in our experience we have noticed a vast difference in gaining a diagnosis and correct support in school for the girls especially, I wish this would change. In my own family carers cope with other health issues and juggling responsibilities can be difficult at times.

Grandparents play an important role in the family of children on the autism spectrum as in supporting the parents their children and providing trusted childcare. Grandparents are great at researching information when needed. I love sharing family stories and it passes down information that could be useful in the future.

Periodically throughout the show Anna shared with the listeners about up to date news and events that were happening in the world of Autism, as carer as well as a guest I found it informative and interesting.

‘All in a Row’ Review

‘All in a Row’ Review

‘All in a Row’ is a new play from Alex Oates which is at the Southwark Playhouse; as of today (10th February 2019) it is yet to open to the public.

It would be fair to say the play has attracted some unfavourable comments, mainly because of the use of a grey faced puppet to portray an 11 year old boy, Laurence, who has a diagnosis of autistic spectrum condition with some challenging behaviour.

The description of Laurence as being “autistic, non-verbal, and occasionally violent” is a little unfortunate.  That said, I doubt if even the plays harshest critics would claim that Mr Oates is attempting to be deliberately offensive.

The story is set the day before Laurence is about to go to a residential school and, presumably, he is given a grey face because he is utterly dis-empowered from taking part in this process due to his difficulty with communication.

The criticism of the play has been fierce, a lot of focusing on the more obvious aspects of the play particularly the use of the puppet and from the photos shared, dehumanizing the character.

Whilst I originally thought it may have been better if a real child could have played this part, after watching the rehearsal, the theatre said this was laden with issues due to the highly charged emotional scenes in the play. I must say because of the social media negativity towards the puppet it was the first aspect of the play I was searching for.

It is actually just the upper torso made of soft grey felt fabric which is pliable and moves with ease and it is attached to a very talented puppeteer Hugh Purves. His lower body became the lower part of the boy.

The colour grey and type of felt fabric used I was told it would lend itself to the lighting on stage which I didn’t experience due to the rehearsal not based in the theatre.

In summary, ‘All in a Row’ is a play about the turmoil that a husband and wife are feeling the day before their beloved son is due to leave home. He is going to live in a residential placement 200 miles from their home. Their only solace at this traumatic time is that there will be horses, which is repeated many times throughout the play by Tamora and Martin for reassurance.

I wanted to make my own mind up about the play since I am a firm believer ‘if you haven’t seen it with your own eyes or heard it with your own ears its best to park it there’. It has great potential to raise autism awareness and to show the impact of making such a HUGE decision and my opinion to be given a fair hearing.

My suggestion would be that before commenting on the play, people should see the play first and evaluate what the writers and actors were trying to achieve and comment accordingly. If you still don’t like it, fair enough, and they can share your observations with the theatre in the Questions and Answer session on some of the days at the end of the play.

Please note ‘There are two autistic members of the team directly involved with Laurence’s characterisation’

I asked two of my team to come with me to watch the play with an open mind so we could share experiences:

Tally Nothey who has recently been through a very similar experience to this family shared:

Having viewed all the harsh negative commentary on social media I had originally thought people had seen the play or they knew something that I didn’t.

With real nervousness and trying to keep an open mind I was more than happy to be invited to the rehearsal.

I can honestly say I was taken back with the raw and honest performances from all the actors.

You can see how people on the spectrum had in one way or another touched the performers lives themselves. 

I found it at times so difficult to watch as it was a replay of my life in front of me, on a stage.

But, I loved every moment. I was in no way offended by the puppet. In many ways, it was the perfect way to depict their son.

The story is about a strained relationship held together by their son.

The cracks in their relationship resonated with me, I have supported many families where each partner wants a different outcome, but the underlying message in all of this is how deeply they love their son and accepting there is no shame in asking for help. 

Jo Wiggins Annand shared: 

Seeing the heart wrenching dynamics between the parents and the carer made this an emotional and gripping drama. First class acting and fantastic portrayals by the actors – I felt every feeling and emotion that they went through. I didn’t want it to end.

I too was intrigued to see what my thoughts were on the puppet Laurence but I can honestly say that once the play had started, the focus wasn’t on him.

This story is about the feelings and emotions that go with having to make life changing decisions like this. It was refreshing to see a play from the prospective of a mum, dad and carer who, may I add, did a superb job in portraying the roles. 

Surprisingly to me, I found him really endearing towards Laurence in the few scenes that were centred around him. I did not see him as a puppet, he was in fact Laurence. Being such a small cast of 4 including Laurence himself was perfect and it did not seem out of place to not use a child. I would in fact feel more uncomfortable had they have used a child due to some of the language and emotional scenes, hence why it has a 16+ age minimum.

Without giving too much away, by the end, there wasn’t a dry eye in the room and I think people will be pleasantly surprised by the emotions it captures. I highly recommend this outstanding play.’

My final thoughts as an Autism Advocate and Chair of an Autism Awareness Charity is that what is not helpful is criticism without evaluation. My concern is with this that autism may become a “toxic” subject in people’s minds and future films documentary or plays and reporters and artists etc may be afraid to go near it – and I am sure none of us want that as an autism community.

The creative team are:

  • Writer – Alex Oates
  • Director – Dominic Shaw
  • Designer – PJ McEvoy
  • Puppet designer and director – Siân Kidd
  • Lighting Designer – Rachel Sampley
  • Sound Designer – Ben Collins
  • Assistant Director – Annabelle Hollingdale

The cast are:

  • Tamora – Charlie Brooks
  • Martin – Simon Lipkin
  • Gary – Michael Fox
  • Laurence (puppeteer) – Hugh Purves

Click here for more information

An article on ASC Parents – Walking the tightrope of education By Georgina Robertson

An article on ASC Parents – Walking the tightrope of education By Georgina Robertson

We can experience isolation within our communities, family relationship breakdowns and our children’s behaviour often deteriorates because of their needs remaining unsupported. Adding to the mix are the educational provisions who deny needs, are unsupported and will actively work against the parent rather than collaboratively. The child’s mental health and well being suffers as they struggle within educational provisions that cannot or will not meet needs.

This is where our children can become isolated and bullied by their peers and even educational professionals within the setting who have little or no understanding of their needs. We often hear of illegal exclusion, off rolling, the use of restraint, punitive punishments, isolation booths and rooms; we hear of the continual focus on weaknesses not strengths, we hear of children developing extreme anxiety based phobias around educational settings and sadly children are known to have taken their lives because of their toxic school environments.

Conversely, a parental diagnosis of ASC seems to afford many the opportunities for redirecting blame to the parent, whilst the school denies that they cannot meet needs. From misapplying policies to threatening the use of social services, parents can become scared to voice their concerns; this fear might be overwhelming because often it is the child who pays the price.

Often the child is blamed for the behaviours of others and the parent blamed for the resulting behaviours their child displays when it all becomes too much. School refusal due to anxiety, stress and PTSD can be triggered by educational settings. EHCP’s are often not fit for purpose; those of an acceptable quality do not guarantee support if they are not implemented because of lack of funding.

It is also an unwritten but recognised anomaly that children with SEN are often denied the opportunity to sit exams in their last years of school. Often schools do what they can to permanently exclude children so as not to affect their school performance scoring. Children who have school phobias/anxieties can often be referred to CAHMS which again use parental diagnosis to justify rational for the child’s behaviour. Often parenting courses are the first point of call but the family dynamics are overlooked and in reality this delays support.

Blaming the parent, using the known associated difficulties adults on the spectrum have, suggesting they need someone to teach them how to parent, these are all tools used against the parent. It is portrayed as if the parents’ difficulties are learnt by the child and can simply be unlearnt, with the use of compliance therapies when recommended.

These compliance therapies are not only supposed to be implemented within educational settings but are also to be enforced within the home to ensure that parents become less reliant on professionals. If the parent cannot be bought into this, they are viewed as the problem by educational provisions but also other professionals.

This exposes the autistic parent to further scrutiny and increased vulnerability. You may wonder why. Many within the autism community speak openly and passionately regarding the negative effects and increased risk of PTSD and suicide.

This is often due to excessive masking as compliance therapies are used. Those parents who empower themselves with supportive literature; who view these therapies as problematic can become targets. In reality, the one way to ensure a parent has to agree and use these therapies is to remove their parental rights in part or totally.

To do this, safeguarding concerns would have to be raised until the point where successfully upheld. The use of social services as a direct or indirect threat is another stress often applied by professionals. These policies are very often misapplied and unjustified.

For the parents who are single with ASC or other disabilities, the risk increases as who is there to validate the reality of your family’s situation?

Single parents are often isolated both within the local community and educational community. Therefore, educational provisions will have staff ratios to substantiate their claims, or discredit our experiences of our child’s behaviour, pretending they are fine when the reality is they are continuing to struggle.

Placing the whole family under continual strain – this is another reason accurate paper trails are vitally important, but the reality is, a parent who fights becomes the problem parent and certain known traits are misused to discredit the parent.

Once a parent is subject to Child Protection, accused falsely of Fabricated or Induced Illness (FII) or other safeguarding issues, it is easier to enforce the interventions being used. Unsurprisingly, this is very often because the parent(s) becomes so paralysed with fear at the prospect of losing their children, they feel and are likely to be between a rock and a hard place.

The parents’ fear is used against them as it is much easier to redirect blame and responsibility to a parent and even the child than implement costly therapeutic supportive therapies, provide specialist equipment and carry out environmental changes. Instead, the enforced therapies which teach a child to be compliant, produce masking behaviours where the child begins to lose their identity.

FII accusations, illegal Section 47 assessments and child protection can and does impact EHCP’s negatively and very often resulting again in additional stress for the whole family. So many breaches of the law take place, it would seem with the brief to minimise the needs of the child because it would seem, of the high costs associated with supporting the child.

School complaint procedures are often long winded taking months to complete. There are often multiple complaint levels to negotiate through providing collaborative evidence to substantiate your complaint. These must be completed before escalating outside of the school or Local Authority. The only option after this is either the Local Government Ombudsman or in some cases the Department for Education but not until parents have tackled every obstacle and jumped through every hoop, all of which delays solutions to support the vulnerable child and affords the school or Local Authority additional time and opportunity for action to be taken to reduce the impact of the compliant.

I wonder how many are aware of the anomaly that appears to take place during complaints procedures of staff leaving often justified but means the professional setting can legitimately state they cannot interview this individual in relation to your complaint; again making it difficult for parent’s complaints to be upheld or for accountability to take place. Or that part of the complaints cannot be undertaken if their child is no longer in that setting.

Another anomaly that appears to occur during this process of seeking support or indeed securing an EHCP is the professionals who are supportive suddenly moving on or initially promising lots but then bow down under the pressure of senior management. Parents do not have this option of leaving to avoid accusations and investigations often falsely levied at them.

Those parents who have been falsely accused have no other option but to defend themselves and prove their innocence as they are presumed guilty with the threat of losing their child or children. They face the potential of family break down under the strain of not only their child’s unsupported needs, school refusal, possibly child VCB (violent and challenging behaviour) due to anxiety, all whilst trying to defend and prove their innocence, establish the detail of their child’s needs and negotiate the many loop holes, lack of culpability and power dynamics that professionals and professional settings can utilise to avoid accountability.

This all contributes in part to potential but often eventual family breakdown which unfortunately discredits the parent and nullifies the collated evidence, as the parents increased susceptibility to depression, anxiety borne from life experiences as a whole and the stressful journey to support their child ensues.

Many children are increasingly experiencing severe mental health issues triggered by numerous factors stemming from the slow drip feeding of their lesser worth, societies difficulties still to understand the complexity of their needs, especially those with hidden disabilities who continue to experience isolation, bullying, ostracism, hate incidence, exclusion within not only their local communities but educational provisions, and after school activity groups.

The stress of trying to conform, to be accepted, the effort of masking exhausts them, the buildup of stress hormones throughout the day resulting in delayed effect when they get home. Their unsupported needs creating frustration, confusion and anxiety. The punitive punishments for simply for being themselves. The sensory overload, overwhelming environments, the hurtful comments and behaviours of others. The feelings expressed during meltdowns or shutdowns. The stigma associated with their behaviours viewed socially unacceptable as they try to regulate their emotions. All impact on their mental health and well being.

Their families too under the strain begin to fracture and break; the knowledge that their diagnosis of ASC is used to justify their child or children being denied their human rights of education, health, care and potentially their family.

Despite knowledge of the potential breakdown of the family, support is denied for so many reasons and rational provided to do so as blame is to redirected back to parent.

Eventually, worst case scenario can become the reality; young children and adults taken, removed, sometimes younger siblings under the guise of safeguarding risks and via false accusations, as the children self-harm, attempt suicide, SEN VCB escalating beyond manageable levels becoming too much for all involved, attributed in part to the many systematic failings, lack of support leading to family breakdown mean the professionals have no choice but to do so. This could be drastically reduced if support and appropriate intervention were implemented earlier, but this is not the case.

Thus the cycle continues with children and young adults removed from their families, institutionalised, struggling to cope, experiencing abuse of power dynamics, trapped in a system that is failing, destroying life opportunities.

Even when you leave these institutions, your freedom to be all you can be, to a have the life worth living, reaching your potential gets lost and your life experiences used in a game of power dynamics; our lived experiences used by professionals to justify their claims that we are a risk to your child if we become pregnant.

Employment opportunities are reduced because of the behaviours used to self-regulate whilst trying to cope in a system that fails so many children and families. The missed opportunities to reach our potential because the support, reasonable adjustments and equipment that could have improved not only our quality of life but help us reach our full potential, yet the support we as individuals, and our family’s needed was never provided and still isn’t.

Parental diagnosis is the catalyst, the justifiable reason; the child is lost as the focus is on the parent, the diagnosis, the weaknesses perceived or real risks borne from being in care in residential settings and ATU’s and other psychiatrist institutions. The resulting mental health issues and perceived maladaptive coping systems used to self-regulate as children grew and developed unsupported, needs unmet and the many systematic failings and exclusion from society. What is rarely acknowledged is that the systematic failings took the young child, adult down this route.

These continue today with the support of safeguarding tick lists used by social services and Chancers FII flagship used by professionals in all sectors to falsely accuse and deny support which eventually contributes if not causes family breakdown, especially with the other stress factors experienced by the family as a whole in their efforts to help their child(ren).

As I mentioned in my previous article Parental Asc Diagnosis, the core issue is the lack of money and provision to meet needs. Families left to break. Children’s mental health suffering as a result, many requiring admission to units that perpetuate the cycle due to corporate parenting.

Simply having ASC or a hEDS (Hypermobility Ehlers-Danlos Spectrum diagnosis) is viewed as a risk by many professionals’. Unfortunately, society’s view of ASC adults leads to isolation and ostracism such is the belief perpetuated by outdated stereotypical images of what ASC looks like and what they believe we can or cannot achieve or be; for example, we should be thoroughly assessed before being allowed to be parents, have intensive social care involvement throughout the children’s lives thus perpetuating the negative life experiences of children and adults today and into the future.

I write this as an adult ASC survivor, who as a child experienced many of the institutions and systems listed above. I am now a parent who is also experiencing more injustices, whereby a past I had no control over is used against me.

Unfortunately, this is the reality of many whose lived experiences and the ensuing consequences of systematic failures towards them as children, continue to be ignored, silenced or viewed as over-exaggerations and discredited.

Life in care, residential settings, ATUs and other psychiatrist institutions, is this what parents want for their children when they become adults?

Most certainly not, however, if nothing changes, then nothing will change; the cycle will continue. The same stories will continue to be retold by the future generations, unless the existing systematic abuse that is currently damaging thousands of innocent people’s lives is challenged and completely eradicated from society.