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Bockett’s Farm Park Trip  

On Saturday 23rd of April we had a lovely day out to Bockett’s Farm as a way of celebrating National Pet Month. During our visit we discussed the importance of assistance animals for people with additional needs and disabilities as well as how animals has helped them.

At the farm we were allocated our own spacious barn where we had lunch and ATLAS were given yummy Easter eggs that had kindly been donated from ADP and Enterprise. Our barn could also be us as a safe space if needed. We were able to do lots of fun activities with the animals. Firstly, we walked around the farm where we saw horses, ponies, Shetland ponies and Giant Poitou Donkeys at the stable which was a fan favourite among ATLAS members as many of them didn’t want to leave theses friendly animals. We also went to the Animal Discovery Barn where we meet fluffy sheep’s, goats, llamas, pigs, and cows up close; lots of pictures were taken of these cute animals. After lunch we went on another farm walk where we discovered llamas and Swedish Fallow deer grazing peacefully in their paddocks. Then we went over to Little Hoppington were we met cute furry little friends which included rabbits, degu, pigs, and rats. During this time, we were able to have our animal encounter where we could pet pretty rabbits, a happy chicken, and a fun guinea pig. Since so many pictures were taken of the animals, we had a mini photography and video competition where the winner was able to buy something in the gift shop which was full of fun things to choose form. ATLAS members really enjoyed the trip as many of them find animals a personal comfort and relaxing to spend time with, some talked about their pets who help them to feel calm. 😊

If you would like more information or to join ATLAS, please email us at: ATLAS@surreycc.gov.uk where you join in fun on opportunities such as our trips.

Alternatively, you can message us on social media:

Some pictures from our fun trip 😊

One of the ATLAS members petting a adorable black rabbit.
One of the ATLAS members petting a adorable black rabbit
ATLAS member petting a sweet black rabbit.
ATLAS member petting a sweet black rabbit
ATLAS member petting a sweet black rabbit.
ATLAS member petting a sweet black rabbit
A photo of two friendly goats.
A photo of two friendly goats
Categories
Additional Needs and Disabilities Autism epilepsy Neurodiversity Question Card seizures

Is there a link between epilepsy and autism?

What is epilepsy and seizures?

Epilepsy is a condition that causes seizures this is due to an imbalance in brain chemistry so messages that travel between nerve cells or neurons become scrambled. A seizure is a burst of uncontrolled electrical brain activity between the brain cells common symptoms of this are stiffening or jerking of muscles, confusion, loss of consciousness, unusual thoughts or sensations.

Here are the most common types of seizures in individuals with autism:

  • Generalised tonic-clonic seizures sometimes called generalised onset motor seizures– it affects both halves of the brain and causes both stiffening of muscles and twitching or jerking.
  • Focal Onset Aware Seizures- they start in one area of the brain and may cause loss of awareness, or the person remain fully aware during the episode. This is the most common type of seizure for those who have epilepsy.
  • Febrile seizures- this type of seizure happens to children aged 3 months to 6 years and they occur when the child has a high fever. This may be either a general or focal seizure. Sometimes this may lead up to the development of epilepsy.

Is there a link between autism and epilepsy?

Yes

20-40% of people with autism have epilepsy. Autistic people are more likely to develop epilepsy compared to those who are neurotypical and people with epilepsy are more likely to be autistic than those without. The risk of developing seizures increases as person gets older in life.

One theory suggests that the overlap in conditions may be because they share common biological mechanisms such as too much excitation brain which may stem from too little inhibition (an imbalance of the two). However, many experts remain sceptical about this theory despite the data to support this claim from a study published in 2003.

Other disorders related to involve seizures also involve seizures these include Landau-Kleffner Syndrome, Rett Syndrome, Angelman Syndrome and Tuberous sclerosis complex and Fragile X and many other syndromes.

Potential signs to look out for

It can be difficult to recognize seizure activity when the person is autistic this may be because of communication barriers and the overlap in symptoms of the two. Cognitive delay, impaired social interaction, aggression and irritable behaviour can be seen in children with epilepsy but also if in those who are autistic as well which makes it confusing to find the cause.

However, there are some red flags to note for seizure which may be useful:

  • Staring episodes (could be a sign of absence or atypical absence seizures)
  • Stiffening (could be a sign of tonic seizures)
  • Rhythmic shaking or twitching (could be a sign of focal aware/simple partial seizures)
  • Loss of attention (could be assign of absence or focal impaired awareness/complex seizures)

Atypical absence seizure– Starts in both sides of the brain and is unusual or different compared to typical absence seizures.

Absence seizures– Starts in both sides of the brain and causes a short period of “blanking out” or staring into spaces.

Focal onset impaired awareness seizure– Begins in one side of the brain and the person has a change in their level of awareness during some or all of the seizure.

Tips for managing epilepsy.
  • Know that it could happen– making sure friends, family and carers are aware the possibility of epilepsy developing in someone with autism.
  • Get a personalised plan– creating a plan with doctors can help family and healthcare professionals to manage the seizures.
  • Regular medication– it’s important to medication as instructed if prescribed.

Identify triggers-not everyone has triggers before a seizure but common signs to look out for is being overtired, missing meals and forgetting to take epilepsy medication. Keeping a diary of seizures can help to see if there are any triggers.

  • Avoid heavy drinking– heavy drinking can cause seizures and make medication less effective.
  • Regular reviews– this is important as it can see if your treatment plan is going well. If you find doctors appointment there are many adaptions in place to make this experience less stressful like asking if there is a quiet room or asking to book the first or last appointment of the day, so you don’t have to wait too long for example.
  • Safety checks– a safety check can help to identify and lower the risks before someone with epilepsy does an activity.

Side effects of anti-epileptic drugs (AEDs)

AEDs are the most common used treatment for epilepsy and can be quite effective as they can help to control seizures in around 7 out of 10 people. However, side effects are common when starting the treatment and may pass in a few days or weeks or may not appear for a few weeks.

Some common side effects of AEDs include:

  • A lack of energy
  • Agitation
  • Headaches
  • Drowsiness
  • Uncontrollable shaking (tremors)
  • Unwanted hair growth or hair loss
  • Swollen gums
  • Rashes – this could a sign of a serious reaction so you should contact your GP or specialist.

Disclaimer- The medical information presented here is just information, not medical advice and should be used for educational purposes. If medical advice is needed you should consult your GP or any other appropriate medical professional.

Sources

Autism and epilepsy: Is there a relationship?

The link between autism and epilepsy explained

Epilepsy and autism

Autism and seizures

A guide to managing epilepsy in autism

Treatment for epilepsy

By Reneé

Categories
Additional Needs and Disabilities Personal Story SEND Sensory Processing Disorder

Sensory Processing Disorder

What is a sensory processing disorder?

Sensory Processing Disorder (SPD) is an additional need and disability that affects how your brain processes your senses. It can affect all of the senses, sometimes all at once or sometimes individually.

How does SPD affect me?

It takes a while to process information and the things I do in day-to-day life. It can take me longer to do things because I am thinking about it constantly.

Some examples of things that are difficult:

  • Sound
    • It’s a struggle to find things that are not too loud.
    • Fire alarms are a very fast and loud sound that really hurts my ears. Ear defenders can help block out the sound – they are not for listening to music!
  • Touch
    • Some textures can be overwhelming.
    • I don’t like people to touch me without asking me beforehand unless it is an emergency.
  • Sight
    • Sunlight can be too bright!
    • Flashing lights can make it difficult for me to see and I can find that they are sensory overloading.
    • Smoke (Fire) – can’t see where you are going/irritates the eyes and makes them itchy.
  • Taste
    • I don’t like lumpy mash! How food feels in my mouth is really important. It can change over time what textures I like and those I don’t: I used to not like nuts but now I do!
    • I don’t drink squash at all now, I try to cut it out. Water on its own is good.
  • Smell
    • Nail varnish, petrol, and cigarettes are smells that are too strong. If they come close to me, I need to get away.
  • Other
    • Crowds can be claustrophobic as there is not much room: there is so many people around that you can’t move around properly.
    • New places and new people because there is lots of new information I have to process!

Even though I find some sensory experiences difficult, I also use sensory experiences to help myself and keep myself calm. Some things that I enjoy:

  • Sound
    • Classical Disney music, normally piano music because I find it a quiet, mindful sort of sound.
    • Nature sounds, especially quiet song birds.
  • Touch
    • Squishy Fidget toys and cuddly soft toys are very comforting, ground me, and help me to feel secure. Cuddly toys are really helpful when you need to go to sleep.
    • Blankets are really useful too. I like blankets to be smooth and soft to touch, dark blue in colour. I like blue when I am trying to sleep.
    • I like it when people I trust and know tuck me into bed, link arms with me, or sometimes give me a hug!
    • Petting my dog, Honey, can help me calm down quickly. Lots of people find pets helpful!
  • Sight
    • I like looking up at the stars in the sky at night. Which also helps me go to sleep because it is dark.
  • Taste
    • Soft and smooth textures – like when you are eating yoghurt.
  • Smell
    • The smell of homemade food, for example cauliflower cheese as well as chips. It is really comforting!
  • Temperature
    • I prefer cold temperatures, for example in sensory rooms where they are often normal to cold temperatures with a heater if you need it.

How you can support someone with SPD?

If they are struggling, you can:

  • Take them to a quiet room.
  • Help them find their fidget toys, or provide them with some.
  • Play some music that they enjoy.
  • Offer them a glass of water.
  • If they need you to, repeat information.
  • Do not judge them.
  • Do not stare at them.
  • Be patient and understanding.
  • Call their support person if they become non-verbal or give them something to write on.
Categories
Additional Needs and Disabilities Celebration Celebrities Inspirational People Learning Difficulties Media SEND

MENCAP Myth Busters and ATLAS

What is Mencap?

Mencap is a charity in the UK that works with people who have a learning disability.

What is their goal?

Mencap want a world where people with a learning disability are valued equally, listened too and included.

This is what some of their objectives are:

  • We want to have made a significant and measurable improvement to people’s attitudes towards people with a learning disability.
  • We want to have contributed to improving the quality of life for people with a learning disability.
  • We want more people with a learning disability to have stronger friendships and relationships, and be better connected to their communities

If you want to read their other objectives, as well as other information about Mencap, go on to this link:

About us – What we do | Mencap

Who are the Mythbusters?

Mythbusters are a group of eighteen ambassadors who are using their platforms to tackle the stigma and lack of awareness around learning disabilities.

One of the ambassadors Jessica Jane who is a Paralympic champion and campaigner wants more people to know that just because a person does not look like they have a disability, does not mean that they don’t.

ATLAS Logo

Who is ATLAS and what do they do?

ATLAS (Accept, Teach, Listen, Access, Support) is a participation group run by the User Voice and Participation team also does similar work as Mencap, by empowering children and young people (Their parents and carers involved too) with additional needs and disabilities to share their opinions about the services they use.

This is what some of their objectives are:

  • To raise our voices on important topics from the perspective of young people with additional needs and disabilities, living in Surrey (UK)
  • To provide feedback on and co-produce Surrey services for young people with additional needs and disabilities
  • To create a safe space for young people with additional needs and disabilities to share their experiences confidentially  

If you want to read their other objectives, as well as other information about ATLAS, go on to this link:

ATLAS Aims, Priority Areas and Action Cards – ATLAS Surrey (surreyatlas.uk)

ATLAS sessions take place (Virtual and in person) on the first and third Wednesdays of each month, the location of the sessions is in Epsom and Woking.

Atlas Ambassadors

ATLAS also has ambassadors, these ambassadors help by raising the voices of all the ATLAS members and supporting with how the groups are run.

If you want to know more information about the groups, then go on to this link:

ATLAS Groups – ATLAS Surrey (surreyatlas.uk)

In order to achieve their objects, ATLAS have made selected a couple of areas that need to be prioritised, these are some of the areas that they have made a priority:

Ableism, Stigma and Discrimination

  • ‘Able-Bodied’ should not be the goal
  • Power of language and attitudes
  • Media Representation
  • Need for co-production and professionals with lived experience
  • Self-description

Autism

  • Acceptance
  • Awareness
  • Emergency services
  • Helping professionals to understand how to work with autistic people -Co-morbidity with mental health

If you want to read about other areas that ATLAS have made a priority, then go on to this link:

ATLAS Aims, Priority Areas and Action Cards – ATLAS Surrey (surreyatlas.uk)

Action cards and their importance

Action cards are themes and topics that young people raise as important issues that need immediate action.

An action card is raised when four or more young people share similar feedback or think that it should be raised on a specific topic.

The UVP team then step in and share what the young people have said to the relevant services, and in return receive a response from them within two months.

Action cards can only be closed with the consent of children and young people.

If you would like further information about Mencap and ATLAS, then you can follow them on social media, their social media will be listed down below.

Mencap

Website:

Learning Disability – Down’s Syndrome – Williams syndrome | Mencap

Facebook: Mencap – Home | Facebook

Twitter: Mencap (@mencap_charity) / Twitter

Youtube: Mencap – YouTube

Linkedin: Mencap | LinkedIn

Instagram: https://www.instagram.com/mencap

ATLAS

Website:

About User Voice and Participation – Surrey County Council (surreycc.gov.uk) (Undergoing change)

Facebook: Surrey ATLAS – Home | Facebook

Instagram: https://www.instagram.com/surreyatlas/

Youtube: User Voice & Participation – YouTube

Twitter: ATLAS Youth Advisors (@SurreyAtlas) / Twitter

Categories
Additional Needs and Disabilities Book Review Film Media SEND

Wonder: is Auggie’s disability portrayed to a high standard?

What is Wonder about?

on the left the book cover of Wonder is shown which has the outline of a face with short black hair and Wonder written over a blue eye. And on the right it is an image of the film cover, a boy stood wearing a motorcycle helmet with the visor up, wonder is written over the top
Picture of the book Wonder (left) and Poster of the movie adaptation (right)

Wonder was published in 2012 and it was written by R.J. Palacio. Wonder tells the story of 10-year-old Auggie Pullman, a boy with facial differences and his experiences dealing with the condition as he adapts to regular school life. It comes with ups and downs that involves different forms of bullying.

However, there are also brighter aspects as the book also explores other themes such as friendship and compassion as well as Auggie’s journey and self-confidence throughout the book.

The book was popular enough with readers to receive three additional books that relates to the story called Auggie and Me, 365 of Wonder and We’re all Wonders.  The novel also gained a film adaptation that was produced by Lionsgate.

The film adaptation of Wonder was released on November 17th, 2017. It received positive reviews from critics and audiences, with many praising the actor’s portrayal of the characters that were in the book including Jacob Tremblay who played Auggie in the movie.

How was Auggie’s disability presented in the novel / movie?

Screenshot of the film wonder, close-up of Auggie's face. Prosthetics have been used to give the actor a facial difference.
Auggie (played by Jacob Tremblay) in the film.

The disability that Auggie has in the novel and movie is called Treacher Collins syndrome. This is a rare genetic condition that affects the way a child’s face develops, especially the cheekbones, jaws, ears, and eyelids.

The book was inspired by a real-life encounter that the author’s son had with a child who had a similar disability to the one that Auggie has in the novel. This encounter as well as a song called “Wonder” inspired the author to write the book hoping that it could illustrate a valuable lesson.

Even though the movie was received well by viewers, there were heavy criticisms mainly from the disabled community about casting a non-disabled actor to play Auggie in the movie. He was made to look disfigured with extensive makeup and had to fake a speech impediment.

Jacob Tremblay did reach out to children with craniofacial differences to accurately portray their experiences, however the critics condemned the director for not trying hard enough to find an actual disabled actor to play Auggie.

How were certain topics tackled throughout the novel and movie?

From L to R: Jacob Tremblay as "Auggie," Elle McKinnon as "Charlotte" and Noah Jupe as "Jack Will" in WONDER.
From Left to Right: Jacob Tremblay as “Auggie,” Elle McKinnon as “Charlotte” and Noah Jupe as “Jack Will” in Wonder.

A major aspect that is presented in the novel and movie is that even though Wonder begins from Auggie’s point of view. However it soon switches to the perspectives of his classmates, his sister, her boyfriend, his best friend, and others.

The author did this as she wanted the reader to see how all the character’s voices converge to portray a community as it struggles with differences, as well as showing the true nature of empathy, compassion, acceptance, friendship, and kindness.

My final thoughts on Wonder

Even though the film is criticised for not trying to cast an actual disabled actor to play the role of Auggie which indirectly made the film less realistic, the story itself was really well written and won the hearts of everyone who has read the book and watched the film.

Categories
Additional Needs and Disabilities Autism Neurodiversity Personal Story Safety Self-Care

My Meltdowns and Shutdowns

Definitions

Meltdown – a response to an overwhelming situation that includes signs of distress.

Shutdown – where a person may withdraw from the people and environment around them. They may need their own space and time to process.

My Meltdowns

I don’t like meltdowns because when I used to have really big, long and bad meltdowns I used to say a lot of mean things, tell lies, say horrible things to others and myself.

Meltdowns make me look like I am refusing to do something or am reluctant to do something when I’m not – I’m in a meltdown.

I used to run off and hide, but I don’t do that anymore unless it is for a fun activity where people aren’t going to get worried. I used to also climb up trees and bushes to hide from people when I was having a meltdown, or hide underneath something, but I don’t do this anymore. I now cover my face with my hands, people understand I’m not hiding to be rude, I just need some alone time.

I don’t like to make people worried.

I like to walk, jog or run-in safe areas when I am having a meltdown to feel safe – I still do this.

Recently I have been having less meltdowns than I used to, which are also smaller than they used to be. I have been having a lot of shutdowns recently.

My Shutdowns

I have had a lot of shutdowns in the evenings since I finished college for summer holidays. In the last 7 weeks I have had a shutdown almost everyday.

During the summer holidays I have been going to a lot of clubs, and I have been having a lot of 10 to 40 minutes shutdowns at the clubs that I have been attending in the mornings and the afternoons. Sometimes I feel sorry for the staff who try to help me, but I also worry that they may call someone over and make it an incident.

A lot of people ask me if I am okay when I am having a shutdown, but I am not always able to answer, especially when I am really anxious. There have been a lot of transitions lately that are really busy and loud, which have not helped my anxiety. Some mornings I am too anxious to go into clubs and the staff I have good relationships with have to help me enter the site.

Some days I cry a lot when I am really anxious. People might worry because I might not seem like myself and then ask me a lot of questions at once about how I am and how I have been. Sometimes it can be overwhelming to talk about these things; sometimes I’m not ready to talk about it. When this happens, they might get into my personal space. I worry if people who don’t get tested regularly for Covid-19, get into my personal space.

Sometimes the behaviours of other children and young people at clubs and activities can cause me to be really anxious. Especially bad or violent behaviour.

When I am tired, I find things harder to do and possibly more overwhelming. This can make me cry and I don’t always immediately know what it is that has led to the problem.

How I manage overwhelming situations

Some of the ways I notice that I am becoming overwhelmed is when:

  • There are loud noises
  • There is a difficult situation
  • I see someone breaking the law or doing something dangerous
  • I get too hot
  • I am stressed

Some of the ways I look after myself when I am overwhelmed:

  • Weighted blankets/jackets
  • Fidget toys and chew toys
  • Sitting with my dog, she puts her paws on my lap
  • Going for walk
  • Writing stories
Categories
Achievement Additional Needs and Disabilities Autism Personal Story SEND

The power of participation: getting your voice heard

“Before I came to participation groups, I didn’t talk.”

“Like this [conversation] was a no go … and then I went to my first session and then like, you couldn’t stop me talking, because I realised I was allowed to speak and I was allowed to know things.”

“Professionals don’t know that we don’t know we’re allowed [to speak and know things]. They make us feel like we can’t have knowledge of ourselves, which is what we’re meant to have anyway!”

“That’s been my biggest part in this [participation], is knowing myself, instead of knowing what they want me to know. Without this, I wouldn’t have been able to spread my voice. I would not have a say in terms of what I struggle with.”

Categories
Education SEND Surveys

Public Feedback on Surrey’s Alternative Provision

Contents

  1. Introduction
  2. Additional Mental Health Support
  3. Additional Support for those with Special Educational Needs and Disabilities:
  4. Adaptable Teaching Styles & Understanding Needs
  5. 1:1 Support
  6. Local Alternative Provision

Introduction

Alternative Provision is education outside school for pupils who don’t attend mainstream school for reasons which might include being excluded, behaviour concerns, mental health or illness. Examples of Alternative Provision include Pupil Referral Units, the Alternative Learning Programme (ALP), Short Stay Schools and Access to Education (A2E).

Surrey County Council are redesigning the strategy for Alternative Provision and the User Voice and Participation Team created two online surveys to get the views of children, young people, parents and carers. The surveys were open from 23rd October 2020 – 17th November 2020. We received responses from 65 children and young people and 78 parents and carers. Below are the main things that respondents told us they would like to see in Alternative Provision:

Additional Mental Health Support

38% of children and young people said that mental health was one of the main barriers that affected them staying in mainstream education. Parents and carers also expressed that mental health was a significant issue that they felt needed attention. Therefore, more mental health support is needed to help children and young people to remain in education. Children and young people need to be able to access support easily and in a timely manner to ensure that their mental health issues are addressed quickly, and their education is not affected.

This is what some of the respondents had to say:

‘I could benefit by having someone to talk to whenever I’m feeling down or nervous, someone who could help me when I’m stressed or struggling with work etc’ Young person

‘Someone in the room knowing about my mental health and actually taking the time to help me, without cutting corners’ Young person

‘Support from a doctor or mental health professional as needed’ Parent/Carer.

Additional Support for those with Special Educational Needs and Disabilities

44% of parents and carers said that undiagnosed special educational needs and disabilities (SEND) or lack of support for those with SEND was the main barrier to their child or young person remaining in mainstream education. A number of children and young people also said that they felt their additional needs were a barrier to remaining in education. We therefore need to ensure that children and young people with SEND are diagnosed in a timely manner and that enough support is put in place to help them manage their education. Many parents and carers recognise that the cause of this is often due to a lack of funding for schools which is an area that they feel needs to be addressed.

This is what some of the respondents had to say:

‘People to help with understanding additional need even if people can’t see them’ Young person.

‘Struggle on daily basis – waiting assessment for ADHD – find classrooms very distracting’ Young person.

‘Teachers need more training and support in managing children with additional needs who perhaps do not have an EHCP in place’ Parent/Carer.

Adaptable Teaching Styles & Understanding Needs

A number of respondents were frustrated at the ‘one size fits all’ approach that they feel is often in place in education. It is important that teaching staff have a good understanding of their students’ individual needs and can adapt their teaching styles so that nobody gets left behind.

This is what some of the respondents had to say:

‘Teachers educated in different styles of pupil engagement and schools being adaptable to support this’ Parent/Carer.

‘Tasks explained in different ways if the first way is too difficult to understand’ Young person.

1:1 Support

When children and young people feel like they are falling behind in education, it can cause them a lot of anxiety and, due to class sizes, it is not always possible for the teacher to spend as much time as they need with individual pupils. Respondents from both surveys said that it would be beneficial to have more 1:1 support in place to help children and young people remain in education.

This is what some of the respondents had to say:

‘More 1 to 1 support earlier in schooling to prevent phobia from developing and placement to fail’ Young person.

‘Time out of the classroom and more 1-1 support’ Parent/Carer

Local Alternative Provision

Although some children and young people said that they would be happy to attend alternative provision that was in a different town, more than half said that travelling a long way was likely to affect their attendance. Similarly, over 70% of parents and carers felt that travelling a long distance would impact on their child or young person’s ability to attend e.g. due to anxiety, tiredness etc. We therefore need to ensure that we have enough Alternative Provision available across Surrey to avoid young people having to make unreasonable journeys.

This is what some of the respondents had to say:

‘The fact that I had to wake up every day and travel 2 hours a day to school and back was exhausting’ Young person.

‘This has happened to my son as he was travelling 45 minutes each way in a taxi. He is now unable to attend due to fatigue and anxiety and a reduced timetable is not an option due to the travelling time’ Parent/Carer.

Other things that respondents said they would like to see from Alternative Provision included:

  • Outdoor space‘‘I need space to run and climb when I feel stressed’ Young person.
  • Small classes and separate rooms that students can go to if they need some time out‘A comfortable setting, not just a classroom with different areas if I needed to be alone rather than surrounded by lots of people’ Young person.
  • Nice buildings‘They don’t have a great space to work from. They are teaching in rundown premises which need updating and, compared to local schools, that doesn’t seem fair’ Parent/Carer.
  • Kind teachers ‘Good fun teachers that are more of a friend but can be professional when they need to be’ Young person.

If you would like to read more about the results of the surveys, please see the full reports below:

Categories
Celebrities chronic illness Disability History Month Inspirational People SEND

Lady Gaga and her Fibromyalgia

Who is Lady Gaga?

Lady Gaga is an American singer-songwriter, record producer, actress, and businesswoman. As well as publishing multiple hit singles and albums, she also owns her own cosmetics brand (Haus Cosmetics) and founded a non-profit organization, the Born This Way Foundation. It focuses on the empowerment of young people, improving mental health, and preventing bullying.

She also has mental health difficulties, and fibromyalgia.

What is Fibromyalgia?

Fibromyalgia syndrome is a chronic pain condition. It usually presents with widespread pain and chronic fatigue, but you can experience a wide variety of symptoms. Something a lot of people with fibromyalgia experience is cognitive and memory problems, which is referred to as ‘fibro fog’. At this time, there is no cure for fibromyalgia, although some medications and other therapies can help improve its symptoms.

Lady Gaga’s experience

She shows how this affects her in her documentary, Gaga: Five Foot Two. She has needed to cancel tours and shows because of her health conditions. Shown below is an image of her receiving medical treatment for her chronic pain. It is taken from her documentary.

Lady Gaga is shown lying under a plastic sheet, wincing in pain. There are medically gloved hands - one holding an ultrasound machine and two administering a needle into her shoulder.

She speaks about her chronic pain a lot, to raise awareness about it. She manages her condition well, and something that contributes greatly to this is her access to the latest procedures and top-quality doctors. Even with this, she still experiences debilitating pain.

Lady Gag is shown from the hips up on stage. She is wearing all black. Her outfit is sleeveless so you can see her tattoos. One hand is holding a microphone to her moth and the other is outstretched.

Lady Gaga talks about her chronic pain:

“I get so irritated with people who don’t believe fibromyalgia is real. For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”

“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”

“You will hear the pain in my voice and in some of the lyrics, but it always celebrates.”

“I’m a fighter. I use the word ‘suffer’ not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life.”

“I hope that people watching it that do struggle with chronic pain know that they are not alone. […] see me dance and sing, to know I struggle with things like them and that I work through it and that it can be done.”

Categories
Autism Celebrities Inspirational People SEND

Satoshi Tajiri: how autism inspired Pokémon

Satoshi Tajiri is Japanese and born August 28, 1965. He is the creator of Pokémon which became a huge global success and he has Autism.

When Satoshi Tajiri was a young boy, he loved to explore the outdoors and was really interested with insects. He loved to collect insects, looking for them in ponds, fields and forests, constantly trying to find new insects and coming up with different ways to catch insects such as beetles. He had such an interest in collecting and studying insects that he earned the nickname “Dr. Bug” among other children and friends.

In the late 1970s, the fields and ponds that Tajiri loved as a child were used to build apartment buildings and shopping centres. At this time, Tajiri’s passion for insects moved to video games and arcades. Because of his new obsession captured so much of his time and attention that he actually cut classes and wound up flunking high school.

His parents were concerned; they actually didn’t understand his obsession with games and thought he was a delinquent throwing his life away. He eventually took make-up classes and got his high school diploma, but he only did a two year stint at the Tokyo National College of Technology studying computer science and electronics.

In the early 1990s was when Tajiri first saw two children playing together with Game Boys using the Game Link Cable. He imagined insects crawling along the cable between the two systems. As he thought about the uses of the Game Link Cable, his idea for Pokémon grew, as he wanted to give modern children the chance to hunt for creatures as he did as a child.

He pitched the idea for Pokémon to Nintendo, and although they didn’t fully understand the concept of the game, he was given some initial funding anyway. Tajiri spent the next six years working on Pokémon. Shigeru Miyamoto, the man behind Mario, The Legend of Zelda, Pikmin, and Donkey Kong, was assigned to help in the development of the initial versions of Pocket Monsters, Red and Green. While working on the game Tajiri came to admire Miyamoto as a mentor. As a tribute to Miyamoto and Tajiri, the main character of the original games and his rival have “Satoshi” and “Shigeru” among their default names.

After six years of development, Pokémon Red and Green Versions were completed. Although the Game Boy’s hardware was becoming outdated, the game still grew steadily in popularity because younger children could not afford brand-new console games so they turned to the inexpensive Game Boy games.

The success of Pokémon led to various manga adaptations, an anime, and more Pokémon games and spinoff games.

Satoshi has gone on record saying that he wanted the games to give children the same joy as he had during his bug collecting.  People with autism tend to take up collecting as a hobby, so Satoshi gave them and everyone else a gift that only he could create: a whole new thing to collect.

While Mr. Satoshi Tajiri has confirmed that he has ASD, he does not publicly talk about his condition and would rather remain away from the spotlight, focusing on work and on pursuing his own interests above fame and fortune.

Categories
Disability History Month Education SEND

The History of Mobility Aids

Introduction

The evolution of personal mobility aids is very linked into the way society viewed, or was aware of, people with reduced mobility. If we look back to the Middle Ages, for example, society didn’t feel responsible for people with reduced mobility or other disabilities. Many disabled people lived as outcasts in a society full of superstition.

One of the very first wheelchairs we know about is from the 5th century B.C. and is this blog’s featured image.

Depicted in this ‘wheelchair’ is Confucius, a famous ancient philosopher and teacher. It was a very rudimentary version of a wheelchair, but was a wheeled device used with the intent of helping people with reduced mobility, so is presented here as an example.

Walking sticks have probably been used for thousands of years. Ultimately, in a rudimentary form you can just pick up a branch and use it to help you walk. However, the time at which these were used more as mobility aids rather than like hiking sticks is unclear.

1500s-1900s

Mobility aids started to develop much more around the 15th century.

The oldest known use of a walking frame in England is depicted on a piece of clothing from the 14th century. It depicts either the young Virgin Mary, or Jesus, learning to walk using a three-wheeled frame.

In the 15th century, Queen Elizabeth of Spain set up a hospital where soldiers were provided with prosthetic and therapeutic devices, and they would also receive a pension. During her time as queen, institutions for children, blind, deaf and disabled people were also created. Her husband, King Felipe II, used a wheelchair which was quite elaborate for its time. It had arm and foot rests.

A drawing from the 15th Century of a man in a whellchair. The chair is large with small wheels. The person is slightly reclined due to the design of the chair

But it was only in about the 18th century that wheelchairs were invented that look like the ones we use today. This wheelchair had two large front wheels and a small rear wheel one on each side.

A drawing of an 18th century wheelchair. The two front wheels are large, with two back small wheels. There is a large handle at the back for the person pushing the wheelchair to use. There is also a lap tray and foot rest

In the 19th century, wheelchairs were made mostly out of wood and wicker. They became popular in the USA, especially amongst veterans of the Civil War (and later on, WWI).

A drawing of an 19th century wooden wheelchair. The two front wheels are large, with one small back wheel. There is also a foot rest

1900-1960s

The first folding wheelchair was designed by a pair of engineers in 1932, after one of them had an accident with a landmine during WWI.

Though the first electrically driven wheelchair was created in 1924, the first electric wheelchair was invented after WWII. Lots more soldiers who suffered spinal cord damage in the war had survived, due to advances in technology and medical knowledge, which meant there was a greater demand for wheelchairs.

There had been many improvements to manual wheelchairs, but if you were quadriplegic, you were unable to use a manual wheelchair without the assistance of another person. So, thanks to support from the Canadian Government and other scientists, George Klein invented the electric wheelchair. This enabled people who did not have the energy or mobility to use a self-propelled wheelchair to have more independence.

1960s-1980s

In the 60s and 70s, mobility scooters and rollators appeared, and walkers similar to the ones used today came into development.

Mobility scooters

These came about for the first time in the late 60s. They were quite successful, and seen as alternatives to the electric wheelchair. They were designed for people who could walk, but who couldn’t travel long distances on foot because of problems in their knees or arthritis.

A photograph of a mobility scooter from the late 60s. The scooter has a minimal design that is mostly metal. There is a brown plastic, cushion chair with arm rests on top of a metal plate. In front there are handlebars for steering. It has three small wheels, two at the back and one at the front.

Walkers

A walker is the most stable walking aid. It is made of a frame which you place in front of you and hold onto during movement. These have been used for a long time, but were usually wheeled. In the 70s, walkers more like the Zimmer frames we see used today were created. They were usually made of metal.

A technical drawing of a mobility aid walker. It shows a metal frame with 3 sides and handles at the top in two main designs and from different angles.

Rollators

A rollator is a type of walker that has three or four wheels on it. It also usually has a built in seat, which allows the person using it to stop and rest when needed. Rollators often have a shopping basket attached.

It was invented by Swedish inventor and polio survivor, Aina Wifalk, in 1978.

A picture of a blue framed rollator with a black basket. It has four white wheels and a seat above and behind the basket.
Categories
Bullying Education Mental Health SEND Social

How Language Impacts Lives: Stigma and Ableism

Contents

  1. Introduction
  2. What is stigma?
  3. Bullying
  4. Our role in ableism
  5. Self-description
  6. The power of participation

Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).

Introduction

Recently I have been facilitating some of the virtual group meetings with the ATLAS members. As this week is anti-bullying week, the young people have been sharing their experiences with stigma and bullying as well as discussing ableist language and how they self-describe.

Overall, it is felt and experienced that stigma and bullying are still prevalent. ATLAS are telling us that we all need to be doing more to increase the visibility of additional needs and disabilities, as well as mental health (find out more on comorbid mental health with additional needs and disabilities), throughout society.

One of the repeating themes of discussion has been the importance of language in their experience as young people with additional needs and disabilities; how the language used to define and describe them has a direct impact on their lives.

What is stigma?

In this context, stigma is used to refer to the negative stereotypes and associations that society or individuals hold against a group of people. This results in prejudice and discrimination against the stigmatised group at social and/or structural levels.

In some cases, individuals from the stigmatised group can internalise this stigma, which affects how they view themselves and the expectations they have of themselves. This is known as self-stigma. An example of this which I have heard frequently and struggled with myself can be seen with dyslexia.

Due to the stigma around dyslexia, unfortunately you often hear people with dyslexia calling themselves words like stupid, or setting low expectations for themselves. They may be used to similar treatment from the people around them since diagnosis or had heard of the stigma before realising they were dyslexic themselves. Our member Ryan touches on this in his blog on dyslexia.

Stigma can lead to people being stereotyped, isolated and discriminated against. Ultimately this can have a variety of impacts on the targeted individuals, including avoiding diagnosis or treatment, and becoming the target of bullying.

Bullying

People “make fun of disability in my school.”

There are many different types of bullying and many reasons why someone may be bullied. When it comes to young people being bullied for their additional needs and disabilities, ATLAS felt like this was predominantly because of two factors: being different and the stigma surrounding their additional needs and disabilities.

“If you are different you are going to get bullied”

There is “not much understanding about how to stop [bullying and stigma]… people are still ignorant”

Stigma-based bullying is especially complex because it not only requires localised anti-bullying action but also a society-level approach to reduce stereotypes and prejudice on a larger scale.

An important part of tackling bullying aimed at people with additional needs and disabilities will be to address the widespread ableism and lack of disability awareness in our society.

“I don’t want to be made out to be ‘special’ because I have needs.”

Our role in ableism

What I can do and achieve is “underestimated by the college and my peers” because of my diagnosis

An ableist society is defined by its assumption that people without additional needs or disabilities are the norm. The way that society, physical structures and policies are designed is inherently exclusionary and inaccessible. This results in the limitation and undervaluing of people with additional needs and/or disabilities.

The way ableism presents is complex and can impact people on a variety of fronts. This ranges from the texture of a pavement surface or the lack of braille on building signs, all the way up to public attitudes and the very language used to define us.

“[Ableist] language is used on all official forms from the government. Ableist language is used as the basis of everything.”

People who do not experience and/or are not knowledgeable about additional needs and disabilities may find it hard to see how others can be disadvantaged by design or realise the existence or extent of stigma.

“Sometimes it’s not the words themselves, but the attitudes … You can use the word disabled in a derogatory fashion.”

I would like to recommend that if you are ever in doubt about the language you are or will be using, please ask the people described or impacted by that language.

Self-description

The way in which words are used to describe people shows how society sees them and acts as a perceived measure of both their worth and overall contribution to that society. How we define ourselves reveals our internal existence and true lived experience.

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days … They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised their mistake, encouraged me to go to university.”

When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.

In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).

You can find out more about Lizzie on her Youtube channel.

The power of participation

The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.

This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.

“ATLAS has helped me build friends but not just in ATLAS, outside too, as it has given me confidence.”

Previously, ATLAS was called SYAS (SEND Youth Advisors Surrey). Members worked to rename and rebrand the participation group so that it aligns more closely with how they self-describe.

As a group, not only will ATLAS be redefining itself, but the young people will also be creating a report of preferred terminology, due in the summer.

“My disability is fluid.”

Due to recognition of the fact that people identify with different words in different ways, ATLAS have decided to use a traffic light system to indicate whether words should never be used (red), that some people may be okay with some words (amber) and words that are more widely accepted (green).

“I would rather say I have additional needs than say that I’m disabled.”

“Everyone identifies with the word ‘disability’ differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Some disability you might have a better experience, but with my chronic illness I am not gaining, I am only losing.”

Watch this space for more news about ATLAS and how their participation will be changing to be more accessible! In the meantime I will leave you with one last thought from our young people about the language around additional needs and disabilities:

“Honestly a lot of time it’s about asking. It is about how someone self-describes.”

Categories
Celebration Celebrities Dyslexia Inspirational People SEND Work

Jamie Oliver: a chef with dyslexia

Who is Jamie Oliver?

Jamie Oliver is a British celebrity chef. He has his own restaurant chain, has sold more than 14.55 million books, and has a reported net worth of over £240 million. He also has dyslexia!
He struggled a lot at school – he was labelled as ‘special needs’ and was mocked by the other boys for being taken out of classes. He has always struggled with reading. Jamie did not finish reading his first novel until 2013: he was 38 years old.

“I’m not a good reader. I’ve always tried to read a book and given up after the first page.”

However, he does not think that dyslexia is a limitation. In fact, he has found his dyslexia to be a positive thing! 

“being dyslexic or having special needs is not an excuse or reason for you not to prosper.”

What does Jamie Oliver think of Dyslexia?

Here are some positive things that Jamie Oliver has said about his dyslexia:

  • “If I’m in a meeting I just see the problems differently and I obsess about things differently.”
  • “Some bits of work need to be sweated over and cried over and crafted. Because I’m dyslexic, sometimes, when it requires a load of stuff to be done, I just do it. It’s like I’m a massive ten-tonne boulder rolling down the hill.”
  • “I’ve never struggled – my brain works in quite a weird way and I often imagine how it tastes and put concepts together in my head. I can 85% smell it and almost taste it, I’m normally about right. I’ve found my dyslexia to be such a gift in the job.”
  • “I’m humbled and excited that MI5 employ dyslexics specifically. Dyslexics look at problem-solving in a totally different way. This is why dyslexia is a gift, not a problem.”
Jamie Oliver stands giving eye contact to the camera and offering a plate of food forward. Wearing a blue shirt, with his short hair brushed back, Jamie Oliver is seen in what looks like a home kitchen.
Taken from an interview with Jamie Oliver about Dyslexia on the Guardian Website: “those with dyslexia [are] lucky”.

Made by Dyslexia

In 2017, Jamie Oliver was interviewed by the charity ‘Made by Dyslexia’. You can watch this interview over on YouTube, or read the transcript below:

Jamie Oliver can be seen sitting on a stool in mid-conversation. He is wearning blue jeans and a dark blue shirt. His hair is ruffled. The background is a blurred out, large kitchen with big windows.
Screenshot taken from the #MadeByDyslexia interview with Jamie Oliver on YouTube

Jamie Oliver #madebydyslexia interview transcript:

I loved school. I really loved school. It was like a glorified youth club. I had nothing to offer at school – I didn’t learn much about myself at school, didn’t feel compelled to excel and put extra effort into any class at school. But I liked hanging out with my mates. I didn’t bunk off, cause I was happy, you know it’s almost like the one hardest ingredient of school is if the kid’s happy, you’ve got all the permissions to do everything else. I was really happy, but nothing else happened and there’s a bit of a weird one as well because when I was at school dyslexia wasn’t really- you were either almost blind or not dyslexic so I was just put in special needs, you know, you’ve got a thick kid, so you know.

But now my nephews kind of get a proper run down. They know so much more about the particular type of help they need, they get the assistance, they don’t necessarily get dragged out of class and put in a blimmin’ room at the top of the school, like a sort of dunce do you know what I mean? So it was a bit of a stigma when I was at school – didn’t bother me, because I was one of the bigger boys, but it I mean- it wasn’t great for self-esteem really.

They [the teachers] all said the same thing you know, lovely boy, you know- polite, respectable, you know I got on with teachers but you know that’s why I love the debate about education. You know who said education is what we say it is? Oh look, a couple of dudes from 500 years ago sort of set up the structure of it, English, Maths, Science, okay okay so if you’re not very good at black and white and sort of traditional academia, you’re thick? Therefore you have no value or?

So for me personally, I’ve always been passionate since leaving school about- well there’s different types of intelligence and everyone has the ability to do brilliant. And you know, school should really be about facilitating kids to find their sort of inner genius and their inner confidence, and help them with life skills, and just being good people whereas actually school is quite rigid.

Everything’s based on measurement and every child is different, every town, every school is different, every part of the country is different – so there’s no way of controlling it. It becomes more about culture than sort of hard measurements and you know- quite a few of- well there were only five people in my special needs class but three of them have done really well. I know people that left school with As As and As, but are really on just above minimum wage.

Personally I think my strength is just a complete obsession to any expression of empowering people and teaching people to cook. Whether that’s a book, the paper its on the photographer we use, sitting next to- you know, fifteen years later, the effort on design and how we lay out a page to try and empower Billy from Bognor to be able to achieve something that’s really affordable, that a king would be happy to eat. Ultimately that is what it comes down to for me. We’ve got a massive problem in this country with under-mentored, under-loved kids that don’t see that you could be good at something very simple, and turn it into a life’s work. That you enjoy, that makes you want to get out of bed with a spark in your eye.

Categories
Mental Health Personal Story SEND

Comorbid Mental Health with Additional Needs and Disabilities

Rowan Foster, one of our ATLAS members, shares her knowledge and experience of comorbid mental health with additional needs and disabilities.

Contents

  1. Introduction
  2. Misdiagnosis
  3. The accessibility of treatment
  4. Chronic physical illness and mental health
  5. Lack of services
  6. Conclusion

Introduction

When someone has additional needs and disabilities, the way they experience the world and consequently the way they experience mental health can be very different, because their brain is wired completely differently – especially in autism. The challenges faced by someone with additional needs and disabilities, living in a world that is not built for them and often works against them, can lead to mental health issues, and in addition to this many mental health conditions are highly comorbid in people with additional needs and disabilities: for example, a study found that seven out of ten people with autism also have a condition like anxiety, depression, or OCD.

In this blog post, I will discuss some of the key issues that young people with comorbid mental health and additional needs and disabilities needs often face.

Misdiagnosis

The way that mental health difficulties can present in young people with additional needs and disabilities needs is highly varied and complex – and as a result, they can be harder to treat. Until you can acknowledge, understand, and meet the needs that a young person with additional needs and disabilities has, it’s tricky to diagnose, understand and treat their mental health difficulties.

Sadly, this isn’t always recognised, and a common result of that is misdiagnosis. Especially when a young person presents with mental health difficulties that need urgent treatment, professionals don’t always have the time or the training to properly take additional needs and disabilities into consideration. But the right diagnosis is crucial to the treatment of any mental health difficulty, because a diagnosis helps a professional decide what treatment needs to be given. Giving the wrong treatment is unproductive at best, and seriously harmful at worst.

For example, some of the misdiagnoses that are given to young people with neurodivergent needs are:

It is important to remember that someone with additional needs and disabilities can still have these mental health difficulties. However, the interaction between a young person’s additional needs and disabilities and their mental health difficulties means that a diagnosis should be made more carefully. To make sure that the right diagnosis is made, there should be professionals involved who are knowledgeable about additional needs and disabilities and how the young person’s additional needs and disabilities affect them must be considered.

A mental health professional I had in the past told me that neurodivergent needs are like a ‘neurological backdrop’ to any mental health problems that show up. It’s like painting on blue vs. red paper. You can put the same paint on the paper, in the same way, but the colour will show up differently.

Professionals can misread the severity of a mental health difficulty because the presentation in a young person with additional needs and disabilities is different to what they expect. With neurodivergent needs in particular, interpreting behaviours and reactions from a purely mental health perspective can lead to misdiagnosis. For example, an autistic meltdown could be misread as a severe mental health crisis, even though it could in fact be relatively easy to manage. If nobody in that young person’s care understands how to do so, they are left untreated.

The accessibility of treatment

Even when a young person is diagnosed correctly, treatments often have different effects on someone with additional needs and disabilities. For example, I have heard repeatedly that many young people with autism struggle with CBT, myself included. This is a therapy that the NHS prescribes for a lot of different mental health difficulties. Nonetheless, the very design of CBT means that it is not suitable for everyone. The best therapeutic approaches are individualised and this is especially true for people with neurodivergent needs.

Many therapeutic settings are not accessible to a young person with additional needs and disabilities, through practical accessibility in some cases and sensory difficulties in others. So even if you manage to get the young person treatment that will work for them, you need to make sure this is treatment they can access. What isn’t always understood about accessibility is that a place isn’t fully accessible if it causes undue stress or difficulty to access it. Even if you cannot see any issues with a young person getting to, from and inside a therapeutic setting, that doesn’t mean they aren’t there.

As a person with limited mobility, for example, there are lots of very small things that impact the accessibility of a place – most of which I never would have even thought of when I had full mobility: heavy doors, small steps, the material a path is made from. When the energy and pain it might take for me to get there and back is considered alongside the design of the environment, the recovery time required after an appointment can negatively impact my everyday life.

It is the multitude of small battles that can hurt the most. This is the same for all types of accessibility need. Consider a young person who is anxious about attending a therapeutic setting on top of having to worry about the accessibility of the building they must enter to access support. It is just another stress that they don’t need, and that could exacerbate their existing additional needs and disabilities and/or mental health difficulties.

Imagine that you have been placed somewhere that is supposed to protect you, however it is uncomfortable and possibly painful for you to be there. You are unable to remove yourself from this situation. How do you feel?

Inpatient facilities are often not accessible as they tend to be bright and/or loud spaces with very little privacy: a sensory nightmare. If a young person is there under a section, they cannot leave. Someone in an inpatient facility for their mental health would have been struggling before they arrived. They shouldn’t have to deal with inaccessibility on top of that.

Physical chronic illness/disability and mental health

It is also worth noting that if a young person has physical difficulties like chronic illnesses or disabilities, the relationship between this and comorbid mental health is often not explored in the right way. Young people are often not believed about symptoms like chronic pain – it is assumed that you’re ‘too young’ or exaggerating to get out of doing something. I’ve heard it said before that everything would be better if mental health was treated like physical health, but I’m of the opinion that this isn’t true. Regardless of if your health issues are physical or mental, if someone can’t see it, they often assume it doesn’t exist.

It can be very difficult to access medical treatment or be believed about physical symptoms if you have mental health difficulties, because medical practitioners will often assume that these are the cause. The early symptoms of my physical chronic illnesses were not recognized or addressed by paediatric health services, because they assumed that they were caused by my mental health issues. If they’d been recognized earlier, that could have prevented or at least mitigated the later decline in my physical health.

I have heard of many cases where people are prescribed psychological therapy in the expectation that this will eliminate a lot of their chronic illness symptoms. Therapy can be beneficial for long-term symptom management as it can help you learn to accept and manage your condition however, it is not a cure and shouldn’t be administered as such.

The stress of dealing with physical chronic illness and disability can cause mental health difficulties by itself, especially in cases where pain is involved. It can be so scary for a young person to have to take responsibility for their own body in that way, and it doesn’t help your self esteem when you can’t participate in the same things that your peers do. If your physical illness or disability sets in later in life, then you might also be grieving for the loss of a healthy body.

Young people with physical chronic illnesses and disabilities need empathy and support – and young people need to be believed and listened to.

Lack of services

There is no service or provision for a young person with SEND needs and mental health issues. Unfortunately, this means that nobody knows what to do when a young person needs support for both simultaneously, and nobody knows who is responsible for them. Young people with these more complex needs often find themselves jumping from service to service. The way that the services are built now means that a young person often finds themselves receiving treatment or support from a multitude of teams – none of whom speak to each other. It is usually left up to the young person and their parents or carers to coordinate their own care.

A holistic approach is key to treatment of many mental health conditions, which the current services fail to do. Mental health services do not understand the additional needs and disabilities, and the additional needs and disabilities either don’t have a service (because almost all additional needs and disabilities services are built for young people with moderate to severe visible + physical disabilities or learning difficulties with lower cognitive functioning) or their service doesn’t fully understand the mental health needs, especially when complex. These services can provide some help, but none of them can fully meet that young person’s needs. The fact that they do not talk to each other compounds the issue. The young person is left with a disorganised, often ineffective, treatment path, and it is difficult for them to know what is happening.

Conclusion

I think we need more integrated and holistic care options to provide for the needs of young people with additional needs and disabilities. We face enough discrimination from the world around us. It is disappointing that we sometimes also face this discrimination from the services that are supposed to help us. I believe that we can do better than that. We must.

I hope this post has been a valuable read for you. Maybe you related to parts of it, or maybe you’ve learnt something new. Even more so, I hope that you remember to treat the young people with additional needs and disabilities in your life with compassion and respect. Especially if that person is you.

ATLAS members chose to self-describe with additional needs and disabilities and therefore this article has been updated to replace SEND with additional needs and disabilities.


Resources

[1]https://www.autismresearchtrust.org/news/borderline-personality-disorder-or-autism

[2]https://pro.psychcentral.com/aspergers-syndrome-vs-ocd-how-to-avoid-misdiagnosis/

[3]https://www.drakeinstitute.com/adhd-vs-anxiety-whats-the-difference

[4]https://socialanxietyinstitute.org/social-anxiety-and-aspergers-differences

[5]https://guilfordjournals.com/doi/abs/10.1521/adhd.2005.13.3.9?journalCode=adhd

[6]https://adhdnews.qbtech.com/odd-a-problem-of-misdiagnosis#

[7] https://network.autism.org.uk/good-practice/case-studies/eating-disorder-or-disordered-eating-eating-patterns-autism