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.
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.
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:
We found sharing their self-care tips and tricks with each other really helpful, especially during Covid. ATLAS members have found that during the pandemic it has been even more important to think about how you are spending our time, as we’ve not been able to do our everyday ‘normal’ stuff, like socialising.
We hope that others may find our thoughts and discussions around maintaining your mental health and wellbeing will be helpful to others.
The Importance of Self-Care
It has and continues to be important that you keep yourself active (however YOU define active), your mind active, and do things that you enjoy whilst staying safe. This can include any hobbies that you have like reading, drawing, listening, making music, going out for a walk: anything at all that you think will help you.
It is also important to make sure that you are eating and drinking enough water every day as that has a massive benefit to improving your mental health and wellbeing.
Tips and Tricks
We’re all different for what we find helpful. Here are some of the activities ATLAS members use for self-care:
Keep in touch with your friends because you don’t do much [during a pandemic].
Call someone everyday – video call not just phone call or texting. Because if I don’t socialise for a while, I will forget how to socialise.
Meditation and listening to music.
Click and collect libraries.
Making time for your hobbies
Weighted blankets help a lot. Weight toys, weighted lap pad and weighted jacket.
Baths and Showering.
I have been trying to explore working with my senses. A lot of time with myself, music really helps because it is hard not hearing people’s voices. Without sound I will get tinnitus or hallucinate.
White noises are also really good, especially with Autism I find big changes in volume different, so having noise all the time helps when people call me.
Keeping bin by the bed.
Using a bed desk if you can’t get out of bed so you are changing your work environment and home environment.
I try and make sure I have a main event every day. I think it is an ADHD thing – I can’t do something when I am waiting for something planned.
ATLAS members find that routines help to structure out our day-to-day life and activities. Here are some of the areas we use routines to help us with:
Eat healthy meals.
Have a timetable.
Have a sleep routine.
Similar sleep / wake up times.
Having alarms / reminders.
Put reminders on phone.
Write in a diary.
Try and have different places in the house for different activities.
Everyday, do something that you enjoy.
Have structure in school / work.
Have a time in the day where you step away from screens.
Make exercise fun – put on music and dance or play a game that includes exercise like a virtual reality game (e.g. Wii Fit).
Listen to music.
We find that routines are really helpful; they give us the information on what we want or need to be doing and when, as well as helping us to manage our time.
Importantly, routines help us to be more independent, reduce anxiety, and some of us have found it has also helped us build more confidence in ourselves!
Self-Care During Self-Care!
When developing routines, we feel it is important that you:
Don’t pressure yourself.
Take little breaks.
Tell people close to you what you need, or how you feel.
Do you have any tips and tricks you would like to share? Please comment below!
Recently in ATLAS, members were discussing their experiences with dentists and realised that many of the members had dental and/or oral health problems.
Members raised a Question Card for the User Voice and Participation Team staff to find out whether there was a connection between dental and oral health problems with additional needs and disabilities. If so, young people wanted to know what support there was for them and how to access it in Surrey!
The link between dental and oral health and learning disabilities
Good oral health is an important part in people’s general health and quality of life. There is evidence to show that people with additional needs and disabilities have poorer oral health and more problems in accessing dental services than people in the general population.
However, national, and international research, consistently shows that people with learning disabilities have:
higher levels of gum disease
greater gingival inflammation
higher numbers of missing teeth
increased rates of tooth lessness
higher plaque levels
greater unmet oral health needs
poorer access to dental services and less preventative dentistry
People with learning disabilities may often be unaware of dental problems and may be reliant on their carers/paid supporters for oral care and initiating dental visits. There may also be a need for additional help with their oral care and support to get good dental treatment because of difficulties with mental and physical health.
The website includes information on who could be entitled to free dental care and a list of useful links for young people and carers. You can also find information on your rights and the law around accessibility.
ATLAS will be reviewing this information soon! We will update this blog with their response!
If you would like to join ATLAS, find out more on our ‘Get Involved!‘ page.
You may have heard of Sia’s new movie, Music, which was criticised before release for casting a non-autistic actor as a mostly non-verbal, autistic main character.
In the midst of Sia lashing out at criticism on social media, ATLAS members talked about how the casting of Music and the release trailer made them feel.
Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:
Other young people were torn, because they felt that additional needs and disabilities have been successfully portrayed by actors without additional needs and disabilities elsewhere:
Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.
The portrayal of autism in the media
Sadly, this film does not stand in isolation. The majority of ATLAS members reported that they felt the portrayal of autism in the media was either ‘not very good’ or ‘really terrible’.
There were mixed views around having non-speaking autistic characters in films, however there was a largely positive response to having female characters with autism.
Film is a powerful medium. When used correctly, it can empower and educate people. When somebody sees a film focused on autism, that may be their first exposure to the idea of autism or to an autistic person. This provides an opportunity for people to talk about and approach autism in better ways. Unfortunately, if the film misrepresents people with autism, then the ideas taken from a film could lead to autistic people being viewed and treated in negative ways.
two people with the same condition can have completely different experiences of it
the level of disability someone might experience can vary from day to day.
When people don’t understand the nature of fluidity in disability, it leads to stereotyping and contributes to how disabling society is. People with additional needs and disabilities are actively excluded based on assumptions and passively through it being ignored.
The most important thing to do is listen.
You don’t need to understand how an additional need or disability affects someone to accept it. To believe the individual. To accommodate.
I’m going to crush you with my love
Perhaps one of the most dangerous misunderstandings the film portrays is the use of prone restraint. Restraint should only be used if there is an immediate danger to that individual or others. When that danger has passed, restraint should stop.
ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:
Participation, participation, participation
The film Music being released at the same time as ATLAS is starting to look towards Autism Awareness Week (29th March to 4th April 2021) highlights to me the sheer importance of participation and listening to the voices of people who are experts in their own experience!
How different these events could have been if the voices shared around the release trailer of Music had been properly listened to and acted upon. How different the representation of minorities, vulnerable groups, discriminated groups, those the industry continuously promote stereotypes about could be.
Film can reflect society, but it can also heavily influence it and bring about positive change.
ATLAS members have some advice for anyone reading this who wishes to portray characters with additional needs and disabilities:
Written by Sabrina Peters, Additional Needs and Disabilities Participation Officer and edited by Rowan Foster, ATLAS member and Bank worker for the User Voice and Participation Team.
“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.”
Recently ATLAS members have been discussing what new starters to the group might want to know before their first session!
In a discussion about what could be included in a new starter pack, the group decided it should include information about the impact of ATLAS: “The Big Picture”.
Together, members made a mind map to express what they thought “The Big Picture of ATLAS” was. Below, some of the young people agreed to share their lived experiences in relation to the impacts mentioned.
The mind map
The mind map reads:
Opens the discussion
Helping professionals understand the experience of the young people
Promoting the right of people with additional needs and disabilities
Making Surrey more accessible
Surprise professionals with our points of views
Helps young people be seen
Brought about massive change in services brought about us
Share our expertise on our additional needs and disabilities
Empower young people
Meet and speak with other people with additional needs and disabilities
Quotes from young people
When working with the UVP Team:
The impact of participation on professionals:
Young person with Autism at university:
If you would like to read some of the feedback and consultation work that member’s of ATLAS work on, you can find out more on our ‘Monthly News‘ page!
Please check out our ‘Get Involved‘ page if you are interested in joining ATLAS.
Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).
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.
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.
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.
Our role in ableism
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.
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.
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.
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.
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).
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.
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.
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).
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: