Autism

Over the last few months we have been so busy doing things, that we haven’t had chance to write about any of it, so here’s a whistle-stop tour of what the SPACE Team have been up to. Apologies in advance for the sheer volume of notes. For those of you who prefer highlights we’ve condensed the last few months into the following bullet points. 

• We ran our own conference The World of ADHD According to S.P.A.C.E.
• We attended the ADHD Foundation’s ADHD Conference in Liverpool
• We went to The Houses of Parliament to attend the All Party Parliamentary Group for ADHD meeting and spent time with the Shadow Secretary for Education Angela Rayner
• We attended a Thank You event with PIPStockport to celebrate their tenth anniversary where we were recognised for our partnership with them.
• We started making the necessary changes to our structure and admin functions, including some changes to our websites, blog and mailing lists.
• We started to turn some of our day dreams into real life plans.

So as you can see, it’s been a busy few months for us here, especially considering that we currently operate as a team of volunteers with no source of funding, both of which bring their own set of challenges. There are activities that we can’t do due to a lack of time, activities we can’t do due to a lack of money and we are constantly learning new skills to ensure that our organisation is able to meet the challenges that we have to face head on. The SPACE group started in 2004 because what parents needed at that time didn’t exist, so they created it and over time we have changed and adapted and we have no intention of slowing down now.

Our Conference

On Friday 19th October we ran our own conference – The World of ADHD According to S.P.A.C.E. and despite the usual pre-event panic and the initial worries about ticket sales, the event was a roaring success.

We set out to produce an event that was suitable for both parents and professionals. We wanted to create an event which provided information about ADHD that was useful and allowed for reflection. Without understanding the background to ADHD it is hard for both families and teaching professionals to understand why children with ADHD behave the way that they do. If an adult believes that a child is choosing to behave in a certain way then their management of that behaviour is very different to how they manage disruptive behaviour that a child genuinely can’t help.

ADHD is a neurobiological condition and yet school policy is often informed by official SEND documentation that lists it as a set of behaviours, rather than a difference within the brain. Most people do not know the facts about ADHD and the enduring stereotype of naughty boys throwing chairs continues to steal focus from other presentations of ADHD, particularly those with the Inattentive type. Misinformation and ignorance spread by certain parts of the media have contributed to the ingrained stigma surrounding the condition,  all of which contributes to a system that fails children and leaves the adults responsible for them without the necessary information and support.

We held our conference at the Guild Hall in Stockport with a handful of carefully selected sponsors at the back of the room offering products, services and information that was relevant to the audience on the day.  We had a room full of parents, carers, young adults and those in the teaching profession who were all keen to learn more about ADHD so that they could take that knowledge away and use it to support local children.

Our guest speakers were amazing. They generously gave their time to write and deliver brilliant informative sessions and we could not be more grateful.

The majority of presentations from the day are available on our main website including a short film called Shine A Light on ADHD which we were given special permission to screen ahead of it’s official release on October 31st, the final day of ADHD Awareness Month.

All Party Parliamentary Group for ADHD

Throughout the year the SPACE Team have been supporting the initiative started by ADHD Action to raise the political profile of ADHD and the push for an ADHD Act of Parliament. In January we travelled to Westminster for the launch of the All Party Parliamentary Group (APPG) led by Jo Platt MP.

In October we returned to Westminster to attend an APPG meeting on Education chaired by Alex Sobel MP. We were aware that the Shadow Secretary for Education, Angela Rayner had been closely following the progress of the APPG. Angela has a personal interest in ADHD and was aware of our involvement because she has been a good friend of our very own Michelle for many years.

Notes made during the APPG

• Misconceptions
  • That ADHD is behavioural
  • That we don’t know what to do to improve the situation for those with ADHD
  • That effective assessment and intervention is expensive
• Solutions include equipping teachers with the knowledge to recognise ADHD. We need to train teachers with effective strategies to manage chldren’s behaviour in the classroom.
• Behaviour, even bad behaviour, is a form of communication
• There is a loss of potential
• 40 young people are permanently excluded every school day.
• Strategies are not being put in place following assessment and diagnosis.
• The central guidance for schools is about sanctions and punitive solutions.
• The word discipline actually means to teach, but education (and parenting) has moved away from that.
• Statutory safeguarding training should take place and neurodiversity could form part of that.
• There needs to be tools that explain a child’s difficulties to them.
• Physically disabilities such as blindness are easier for schools to understand and manage.
• There are gaps in the system.
• There needs to be an end to schools “off rolling” pupils
• We need to celebrate all types of learners
• People need to recognise parents as advocates.
• Children are still being penalised for neurobiological conditions that they can’t control.
• “Pills don’t give skills” It shouldn’t be medication alone
• Children need to learn how to regulate themselves and they need help with that.
• Parenting a child with ADHD can be emotionally and physically wearing.
• Parents can be left riddled with guilt
• Parents are often overwhelmed.
• This is our collective responsibility
• There needs to be improved compliance with legal obligations for schools by raising their awareness of ADHD
• There are independent review panels
• Local authorities push back as far as they can on Educational Health and Care Plans (EHCPs)
• The NICE guidelines includes information specific to girls and women with ADHD for the first time, calls to also include information relating to people of colour.
• Early intervention plays a huge part in outcomes
• Emotional disregulation is not included in DSM 5
• Information from DSM is not included in the central SEND document that informs the policy for many schools.
• In many cases Self Harm is the threshold for referral to CAMHS (Child and Adolescent Mental Health Service, known locally as Healthy Young Minds)
• CAMHS are not accepting school referrals if children have ADHD, a decision which needs to be challenged as this is discriminatory and leaves young people with ADHD at serious risk.
• More inclusive learning is needed in schools.
• The perception that parents and young people with ADHD choose to miss appointments.
• Parents may need support with techniques such as Time Management to help them support their child.
• The criminal justice system contains nothing about ADHD despite the numbers of people with the condition being over represented within the prison population.
• “Everybody working with children should be given training on neurodiversity” Angela Rayner
• Look at the community of the school
• ADHD doesn’t have to end in the criminal justice system
• “Our children can be entrepreneurs or serial killers, it’s up to them”
• Negative things at school can be prevented by interrupting the chain of events.
• Children need a way to get rid of the energy they build up
• The United Nations counts breaks as a human right, taking away a child’s playtime is depriving them of this.
• Keeping a child in at playtime means that you are taking away their cool down time.
• Find alternative approaches to taking away playtimes and breaks from children and young people.
• “At the end of the school day it feels s though I’ve been let out of a cage” Oliver Age 12
• Have different expectations for young people with ADHD
• Schools need to be educated
• We have to change the way that we view ADHD
• Punitive approaches to education need to be removed
• Fear of the label is unhelpful

We made the trip from Stockport and Angela made time to not only attend the APPG meeting, but also spent time with us at the Houses of Parliament afterwards.

ADHD Foundation Professional Conference

Last week we attended the ADHD Foundation‘s conference in Liverpool. As always it was a brilliant and very informative. We attended the Education Day and took the opportunity soak up knowledge from the Keynote speakers and catch up with some of our friends in the ADHD community.

The ADHD Foundation is an amazing resource for those with an interest in ADHD. They deliver training in schools and provide services to the NHS. Their website includes a wealth of information for both families and professionals including downloadable information sheets.

This year’s conference was focused on Neurodiversity and Mental Health and included information on not only ADHD but also lots of interesting material about Autism. It isn’t possible to cover a full day in a blog post, but here are some of the notes we made on the day.

Tony Lloyd – Introduction

Tony is the Chief Executive of the ADHD Foundation and delivered the welcome and introduction session.

• The national conversation on ADHD is beginning to change
• The neurodiverse paradigm is starting to challenge the outdated understanding of intelligence
• We are moving away from a deficit model
• ADHD is not an acronym for inappropriate behaviour
• ADHD is a cognitive impairment

Daniel Johnson MSP Opening Address

Daniel is a Member of the Scottish Parliament and openly discusses his ADHD and how he uses medication to allow him to access it’s positives and control any potential negatives #Itakemypillsbecause When told that he was brave to be so open about his ADHD his response was “I’m not brave, but I am angry”

• ADHD is over represented in the prison population which stands at an estimated 25%. Daniel identified at least one youth offenders institution with an ADHD population of 40%
• Ultimately we need to make ADHD political
• It is vital that we bake an understanding into education and social policy
• ADHD is not in the same space as Autism and mental health
• ADHD is a condition defined by it’s myths.
• Any other condition affecting 1 in 20 people would lead to a national outcry
• Treating ADHD should be a combination of Pills and Skills
• The NICE guidelines are not clear enough in some areas
• Daniel made reference to the recent negative comments made by Amanda Speilman (Head of Ofsted) about the alleged over diagnosis of ADHD and suggested that we concentrated on the facts.
• We need to change the language around ADHD
• All teachers should have training on both ADHD and Autism

Professor Barry Carpenter CBE OBE PHD – Keynote Session

• Let’s keep all children mentally wealthy
• Let’s not wait for the self harming to begin
• Teachers need new tools
• Children with ADHD have a “spikey” profile of learning which presents challenges
• Engagement is the goal “the engaged child is a learning child”
• An study of premature births found that 66% were diagnosed with ADHD
• “By 2020 Depression will be the most prevalent childhood disorder” Pretis & Dimara 2008 and Knapp et al 2007
• Referring to the opportunity to raise awareness and make changes “This is the day in the sun for mental health”
• Teachers are going to have to learn [how to support with mental health] on the job
• 1 in 5 children have SEN, but children with SEN are three times more likely to have mental health issues.
• Eating disorders in boys have now outstripped eating disorders in girls.
• Anxiety is a key block to learning. It can prevent the imprint on the brain (McCulloch 2008)
• Even the colour worn by a teacher could be a trigger for some children
• The anxious child is not a learning child.
• Exercise is good for you
• Don’t keep children in a classroom for more than an hour – it’s asking for trouble.
• “Schools are the critical environment” Royal College of Psychiarists

Useful online resources

barrycarpentereducation.com
engagement4learning.com
mental health.org.uk
butterflyprint.co.uk
booksbeyondwords.co.uk

Paula Nagel

Paula is a Principal Educational Psychologist at Place2Be The Place2Be website includes a number of downloadable resources for primary schools, secondary schools and youth groups.

• 1 in 10 children has a diagnosable mental health problem equivalent to 3 children in every classroom.
• 50% of adult mental health illness starts before the age of 14
• 93% of school leaders are unable to access specialist mental health support for pupils when they need it.
• Having a diagnosis means that children’s mental health needs are associated to their diagnosis.
• The Transforming Children and Young People’s Mental Health Provision green paper suggests that there should be a designated mental health lead in schools signposting and raising awareness.
• Place2Be has a service called Place2Talk which can be used as part of a whole school approach.

Barry Carpenter –  Girls on the Autism Spectrum Session

• World Autism Day takes place on 2nd April 2019 and the focus will be on girls with the condition.
• New book – Girl’s on the Autism Spectrum; Flying under the radar. Book is being launched on World Autism Day.
• Girls and Autism – educational, family and personal perspective, a girls and Autism booklet is available on his website.
• The ratios of ASD prevalence are incorrect which has led to diagnostic overshadowing and misdiagnosis.
• Women and girls are explicitly excluded from research on Autism as researchers expect low numbers due to ratio inaccuracies.
• Research on Autism is disproportionately based on autistic males.
• Girls with Autism are girls first
• Girls with Autism present differently to boys and often mask or camouflage their problems and internalise aggression.
• Scripting – the practice of girls knowing what to say in a certain situation without necessarily understanding the situation fully.
• “Thou shalt learn to read by Phonics” this approach won’t work for everybody and some learners need different techniques.
• There is a need for more female specific research on Autism.
• M is for Autism is a book written by the students of Limpsfield Grange School and Vicky Martin

Rory Bremner

Rory is a world famous comedian and impressionist, he is also Patron of the ADHD Foundation and a campaigner for a better understanding and treatment of ADHD. Rory has publicly spoken about his adult diagnosis of ADHD and took part in a Horizon Documentary.

• ADHD is not a deficit of attention, if anything it is an attention surplus.
• Rory’s letters for ADHD would be
  • Able
  • Dynamic
  • High Functioning
  • Different
  • (We did of course tweet him pictures of our ADHD Champion hoodies with our personal ADHD words printed on the back that we wore at last year’s conference)

    

• “We are the pathfinders and the creators”
• We need to frame ADHD differently.
• It’s not our inability, it’s society’s inability to get the best out of us
• Don’t allow your ADHD to overwhelm you.
• Loving and understanding children is the most important thing. Just let them grow naturally. Just love them.
• “Best advice – be yourself. You beat yourself all the time. Stop. The challenge is to learn where it’s a problem and embrace it’s assets.”

Simon Bignell Senior Lecturer in Psychology and Author

• Between 20 and 50% of children with ADHD meet the criteria for Autism
• 30% of children diagnosed with Autism meet the criteria for ADHD
• The University of Derby offers a free online course Understanding Autism, Aspergers and ADHD 

Andrew Whitehouse SEND Consultant

We were frankly so busy enjoying this presentation that we didn’t make many notes!

• When teaching children you need to engage their “giveashitometer” Children need to be engaged.
• When working with children who have a long list of behaviours that you’d like to change rather than tackling all of them all once
  • Pick 3 behaviours that you would like to change.
  • Grade those behaviours as Top, Middle and Bottom
  • Pick the bottom one and work on that particular behaviour first.
• Put strategies and rewards in place and focus on the chosen behaviour. Help the child to achieve, celebrate their success and then move forward to looking at one of their other behaviours.

SPACE Online Updates

The work on our website, blog and other online stuff is ongoing whilst we update, redesign and rearrange the content. We are reorganising our online content and we will be adding more information over the coming weeks. No matter how many changes we make and regardless of how often we change it’s look, the website will always display the details of our next parent and carer meet up.

And that ladies and gentleman is at least half of everything we’ve been doing over the last few months. Apologies for the sheer volume of notes, but too much seemed better than too little, especially when there were so many pages!

Now that everybody is up to date on where we’ve been and what we’ve been doing, we’re going to try and update our blog more often so – watch this space.