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!
It is well noted through observation and research that there is more gender diversity in neurodiverse people than neurotypical people. As gender and sexuality are social constructs, there is speculation that this relationship is due to the fact that being neurodiverse means you are less likely to adhere to cultural and social norms.
You may be wondering what all these terms mean:
Neurodiverse/Neurodiversity/Neurodivergent – variation in in the human brain. This term is used by people to express that their brains are wired differently due to having neurological conditions and/or disorders: ADHD Autism, Dyspraxia, Dyslexia, etc.
Neurotypical – this is a relatively new term that is used to describe people whose brain develops and functions in ways that are considered ‘normal’. It is the opposite of Neurodivergent.
Gender Diversity – is a measure of how much people’s gender differs from cultural or social norms due to their sex at birth.
Sexuality – is all about how someone identifies themselves in relation to the gender or genders that they are attracted to.
Social Construct – something that only exists as a result of humans agreeing that it exists.
Cultural and Social Norms – rules or expectations based on the shared beliefs of different groups of people that guide behaviour and thoughts.
Talking about experiences and difficulties of the LGBT+ community is extremely important to ATLAS members. This is not only because ATLAS want to be strong allies and raise the voices of minorities, but because a number of members are also part of the LGBT+ community themselves.
Autism and Gender
ATLAS members reflected on how they weren’t told about the relationship between Autism and gender diversity when they were diagnosed:
How masking impacts self-discovery
Masking is a survival technique that is used by people with Autism to hide behaviours that may not be accepted by the people around them. This is often achieved by learning to display neurotypical behaviours. Ultimately, masking results in having to hide the true self to be protected from negative consequences.
ATLAS members raised that as a result of masking, it can be difficult to work out who they are:
As a result some members felt unable identify with labels, which could help them find support from peers and communities:
Comphet stands for compulsory heterosexuality. This is where heterosexuality is assumed and enforced by society.
ATLAS members and staff loved this idea: members and staff are now invited to put their pronouns in their Zoom names if they want to!
Whilst family relationships can be extremely important for the wellbeing of children, young people and young adults, unfortunately stigma can lead to bullying, rejection and internalised stigma.
Neurodiverse people, people with Autism, people with disabilities are just as different and individual as neurotypical people, people without an additional need or disability. Talk to us, listen to our experiences and ideas: we are experts in our perspective and have a lot to say!
To make sure that the voices of children, young people and young adults with additional needs and disabilities in the LGBT+ community are heard ATLAS will be starting drop-in sessions to provide a safe space and a platform for voices to be raised.
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.
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:
With the new guidelines of meeting people during lockdown, we understand it may be pretty difficult to get used to this! However, our UVP Apprentice, Amy, shares with you why it is important to keep in contact with your loved one! Read more to find out!
We have been hearing from children and young people that they have been feel lonely during this difficult time. Gina, a UVP Advocate in the team has created some top tips for being alone during self-isolation without feeling lonely. Check it out!