This week is World Autism Acceptance Week.

The annual campaign aims to educate people about autism, and to help make the world a friendlier and more inclusive place for autistic people.

According to the National Autistic Society, more than 1 in 100 people in the UK are autistic, which includes around 150,000 autistic children. However, many more are undiagnosed.

This World Autism Acceptance Week (2 April – 8 April), we encourage you to develop your understanding of autism. We have provided various resources at the bottom of this blog for you to explore, learn from and share with your networks. Together we can help change attitudes and work towards creating a society that works for autistic adults and young people.

In this blog, we will be sharing the stories and experiences of several autistic individuals, who provide insight into what life is like for them and their views on Autism Acceptance Week. By sharing their personal stories, we hope to shed light on the challenges that autistic people face, as well as the strengths that come with this unique way of experiencing the world.

The interviewees featured were organised by Spectrum Gaming, an online community for autistic young people. Spectrum Gaming exists to help autistic people build friendships and increase self-acceptance, as well as to create a movement that will have a positive influence on society through advocacy, and enable strategic change to ensure the needs of autistic young people are met across the UK. To read more about the charity, visit here: http://spectrumgaming.net

Join us in celebrating Autism Acceptance Week, and let’s work together towards a more inclusive and accepting world for everyone.

Andy – age 25

Q: What challenges do you experience as an autistic person?

Every autistic person has things they struggle with, but I believe that the majority of difficulties autistic people face are caused by other people or the environment. People say autistic people lack empathy, but this isn’t actually true and often other people can lack empathy towards us.

As an autistic person, there are some things I struggle with, but I have also noticed that my unique strengths are sometimes seen as negative simply because they are different, and some people aren’t very accepting of difference.

Rather than supporting me to utilise my strengths, the support I used to receive was always focused around trying to “fix my difficulties”, and I know there are many autistic people who have had the same experience. This then meant I used to think I was ‘broken’ or ‘wrong’, even though I was actually pretty cool the way I was. It took me a long time to unlearn the negative beliefs I had about myself that I was taught by other people.

How do you feel about Autism Acceptance Week?

Autism Acceptance Week SHOULD be a good week, but I get frustrated by the huge amount of misinformation that is shared during the week, so I quite dislike it.

How can society be more accepting and accommodating to autistic people?

Don’t be accepting of autism – be accepting of difference.

Let people be awkward, quirky, cheesy, geeky and whatever else.

Don’t make people feel ashamed or judged for having niche interests, acting differently or living life in a way that is different to you.

Let’s be real, most of us autistic people are pretty weird. Embrace our weirdness, and maybe you will learn it is ok to share your weirdness with the world too. No one is “normal”, and the world is a happier place for everyone if we all feel free to be ourselves.

What kind of support or resources have been most helpful to you as an autistic person?

Meeting other openly autistic people. The first time I truly felt I belonged in the world was at a board game meetup for autistic adults. It was pretty magical.

What advice would you give to someone who has recently been diagnosed, or to their family and friends?

A lot of people think we need to learn to ‘fit in’ and be like everyone else, but that isn’t actually true. The happiest autistic people I know do the opposite.

It is ok to dream big. It is ok to follow a niche interest that most people don’t understand. It is ok to strive for more than living a ‘normal life’. In fact, it can be pretty epic.

It is also important to know that the struggles you may be experiencing right now are not permanent. People are referred for an autism diagnosis when they are struggling, so at the point of diagnosis, we are rarely just autistic. Anxiety, anger and other things you may be struggling with are not a normal part of being autistic, they are a result of being misunderstood and your needs not being met.

When I was diagnosed, I thought I was going to be unhappy for my whole life. It was only when I started to do well that I realised this wasn’t true. I want to make sure you know this too. And so do these guys: https://www.youtube.com/watch?v=0pibDq98raQ

Callum – age 20

How has being diagnosed as autistic impacted on your life?

As a small child, I always thought I must experience life differently to most other people because so much of what others said and did make little sense to me. I always hoped to find out why, and for a long time suspected I might be autistic. By my early teens, I was convinced.

I was diagnosed in my mid-teens, and it felt extremely comforting to finally have an answer to the question of why I felt out of place. For me, it was validating and gave me more confidence to stand up for my needs as an autistic person. I later learned a lot of the adults in my early life theorised I was autistic, and I wish I’d been given access to a diagnosis sooner!

What challenges do you experience as an autistic person?

In my case, I feel overwhelmed a lot. I’m over-sensitive to most sensory stimuli, especially light, sounds, and textures, so it’s hard to cope with certain everyday situations and find clothes I’m comfortable wearing.

I experience rejection sensitivity which makes it difficult to cope when I learn that I’ve made a mistake or sense (often wrongly) somebody doesn’t like me or that I’ve upset them. Sometimes it gets so devastating that I struggle to function at all, focusing entirely on a problem somebody else may or may not have with me while unable to eat, work, or enjoy my hobbies.

Autism is different for everyone, but I think almost all of us find it difficult to deal with how much stigma and misunderstanding of autism there is. In public online spaces, it’s not uncommon for me to see armchair autism diagnoses given by misinformed people for others’ poor behaviour – usually, if someone is behaving without compassion, others will explain it away with an ‘oh, they’re probably autistic.’ It hurts to know that such a core part of who I am and how I function is something a large group of people have a wholly incorrect perception of.

What do you think are some of the most common misconceptions about autism?

I think our empathy is wildly misunderstood. Some people seem to think we cannot empathise, or that we’re bad at it, when that’s completely untrue and we often find that non-autistic (particularly neurotypical) people make no effort to empathise with us! The double empathy problem is one of the most validating things I have ever learned about – it describes a situation in which autistic people empathise best with other autistic people, and neurotypicals with other neurotypicals. It casts no blame. I’ve met lots of autistic people who don’t know about it as well – most whom I share it with are very thankful for the understanding and it helps them to avoid feeling needlessly guilty or shameful for how they socially interact.

Another common misconception is the description of ‘mild’ autism, and/or the idea that ‘everyone’s a little autistic’. You’re either autistic or not! It’s something all autistic people experience in different ways, so it might be more or less apparent from an outside perspective, but that doesn’t mean it’s quantifiable.

What do you think is the most important thing people should know about autism?

So many things spring to mind, but if I had to pick one, it would be an understanding of the double empathy problem. Just because our neurotype is in the minority, that doesn’t make us wrong for how we experience the world. We are different, not impaired, and above all else we are people.

How can society be more accepting and accommodating to autistic people?

Because of how drastically unsuited the way society functions is to autistic people; this is a really hard question to answer. It feels like it would be better to uproot the whole thing and start again!

As things stand, I think a big help would be better education about neurodiversity in mainstream schooling, the earlier the better. An understanding of neurodiversity at a young age would, I believe, be very beneficial to all children and instil values of accepting others and respecting their personal boundaries and experiences.

Another brilliant idea is to get rid of silly, needless rules! Being unable to listen to music through headphones quietly during lessons, stand up to stretch your legs during a meeting, or wear clothes you find comfortable in formal contexts is annoying for anyone, but potentially devastating for people with sensory differences. I’m usually a stickler for rules, but in sixth form I completely gave up on them and broke all three of the above – thankfully my teachers didn’t feel a need to punish me for meeting my sensory needs in their classrooms. I didn’t disturb any of the other students and learned better thanks to my ‘misbehaviour’.

On an individual level, it would be very helpful for people to eradicate uptight views on what’s ‘cringe’. Autistic people have special interests we love deeply – for me, there’s no greater joy than Pokémon. To hear people, call my favourite pastimes ‘cringe’ because it’s ‘for kids’ is needless, rude, condescending, and reductive. Everyone should be allowed to enjoy whatever they like, so long as it doesn’t hurt anybody.

What kind of support or resources have been most helpful to you as an autistic person?

For the most part, access to the internet and friends who get it. It’s amazing to meet new people from across the globe who don’t care whether I wear sunglasses when it’s not all that bright or make noises to help myself cope with stress. I’ve met lots of autistic (and non-autistic) friends who can relate to me and socialise with me in mutually comfortable ways, and the best feeling for me is bonding over shared interests.

How do you think autism advocacy can help people better understand and support autistic people?

To be facetious; by striking when the time is right! In seriousness, advocacy works when the people being advocated to are willing to listen. If they’re not willing to listen, that probably means they misunderstand the issue at hand – so it’s best to compute why that is and work on uprooting the problem there.

It’s also crucial that autism advocacy is led by autistic people. We know autism inside and out because it affects almost every aspect of life for us.

What advice would you give to someone who has recently been diagnosed, or to their family and friends?

Remember that a diagnosis doesn’t change who someone is – you’ve always been autistic, the only difference now is that you know! If you’re researching autism, remember that we’re still learning a lot about it and it’s still broadly misunderstood, so it’s good to evaluate the resources you’re looking at to make sure they’re credible.

Harry, age 9

How has being diagnosed as autistic impacted on your life?

I was a bit confused at first but now I know why I struggle with some things and why I see some things differently to my friends. It’s also helped me find other people who are autistic too, so I’ve made some friends who are similar to me.

What challenges do you experience as an autistic person?

I take things literally which means I always think people mean exactly what they say. I can find it hard to know if somebody is being sarcastic and I don’t always understand their tone of voice which means I can get confused about what they mean or if they’re joking.

How do you feel about Autism Acceptance Week?

I think it’s really good because people with autism can tell other people how they see things. It’s also good because not everyone knows what autism is and this could help them understand. It might also help somebody realise they have autism.

What kind of support or resources have been most helpful to you as an autistic person?

It’s been really helpful when I’m allowed to stay inside at playtime because sometimes, I find it hard to socialise and the playground is overwhelming because there’s too many people making lots of noise.

I also like to have my stress ball because it helps me release my anger in a kind way.

What advice would you give to someone who has recently been diagnosed, or to their family.

Having autism is ok, you don’t need to worry about it.  It can feel a bit scary when you have your assessment but it’s fine and the staff are kind and nice.

You might even feel happier when you find out you have autism because it makes you unique!

George, age 13

How do you feel about Autism Acceptance Week?

I have mixed feelings on Autism Acceptance Week. I personally feel like it shouldn’t have to be a thing because it should already be accepted by everyone. But unfortunately it isn’t, so it is a good way to raise awareness of the struggles autistic people have.

What do you think are some of the most common misconceptions about autism?

Autistic people don’t have empathy, autistic people don’t feel anything, autistic people don’t make eye contact, only boys can be autistic, autism can be cured.

What kind of support or resources have been most helpful to you as an autistic person?

Spectrum Gaming has helped me make lots of friends. There are almost always people online, so it makes it way easier to connect with other people through playing games. Spectrum Gaming has also helped me understand myself better and understand autism better. I am a young staff member, so I have done 6 weeks of training on understanding autism and supporting other people. They have also written guides on anxiety and are working on one that explains how autistic people can struggle with sleep.

I also have made friends through SG who have helped me when I have been sad and just been there to be able to talk about issues I have or stressful things that are going on.

Also, Mindjam because it’s enjoyable, you have someone to talk to about basically anything and just play games with you. Mindjam helps me because I have a mentor who I can just talk to about anything. You form a bond with them, and they are someone to play games with for however much time you have it for. It is so much fun.

What do you think is the most important thing people should know about autism?

Autistic people feel all the same feelings as people who aren’t autistic but just express them differently and can be overwhelmed a lot easier. Our brains are different from one another, and people seem to not realise that. Lack of understanding from others makes it a lot harder for us to function in the world.

What challenges do you experience as an autistic person?

Wearing certain clothes, being in big spaces/places with lots of people, loud noises,

functioning in a world where people just don’t seem to understand.

Geo, age 14

How has being diagnosed as autistic impacted on your life?

I was only diagnosed of June last year but since then I’ve felt like I can be more myself and being diagnosed as autistic opened a lot of doors to me, in society and within myself, it gave me a name and reasoning behind why I get overwhelmed over small things like brushing my teeth or lights being too bright in a room.

What challenges do you face as an autistic person?

As an autistic person I face challenges every day, whether it be a more difficult challenge like a busy place or a shop with lots of difficult sensory aspects or it be a smaller thing like the jumper your wearing is too scratchy, and you have to change it. I specifically struggle with lights and sounds and it can get very overwhelming very quickly.

How do you feel about autism acceptance week?

I feel glad that we have a space and a time to openly talk about autism and the difficulties we face daily as well as the positives of being autistic.

What do you think is the most important thing people should know about autism?

I think keeping in mind we struggle in social situations a lot, because personally I don’t ever want to come across as rude when speaking to someone, but I think I can sometimes when I’m uncomfortable in a situation so just bearing in mind, we might not be doing great rather than judging us.

What advice would you give to someone who has recently been diagnosed?

I would say that you need time to accept it because it can definitely be quite overwhelming getting a diagnosis. Give yourself time to let it sink in and let yourself accept it at your own pace, it might give you weaknesses, but autism does not make you weak, embrace it and carry on as you would before.

Archie, age 13

What do you think is the most important thing people should know about autism?

It’s not a disease it’s just a way of thinking, just like how I might see things differently.

How do you feel about Autism Acceptance Week?

Good that people are finally coming to understand autism and the challenges it brings to people in some areas in life.

How can society be more accepting and accommodating to autistic people?

Ask people what it might be like with autism and recognise that autistic people aren’t much different from you, they’re just another person with their own quirks and differences.

How do you think autism advocacy can help people better understand and support autistic people?

To get people to understand what it’s like with autism and how to better accommodate autism but also just to get more people to understand.

What advice would you give to someone who has recently been diagnosed, or to their family and friends?

Embrace it you only live once.

Louisa, age 10

How has being diagnosed as autistic impacted on your life?

My life would have been terrible without a diagnosis of autism because people wouldn’t know how to help me. I was 4 when I was diagnosed, and after I was diagnosed people realised why I found mainstream school hard and how to support me.

What do you think are some of the most common misconceptions about autism?

People think that autistic people have robotic voices, that we all struggle with eye contact, that we cannot make friends, that autism can be mild or severe like it’s a scale.

How do you feel about Autism Acceptance Week?

I don’t feel that good about Autism Acceptance Week because autism should be celebrated all year round.

What do you think is the most important thing people should know about autism?

That autistic people are not all the same.

How can society be more accepting and accommodating to autistic people?
  • Have more specialist schools that understand autism.
  • Not having just one autism hour in stores but having those things all day so all day can be ok in stores for everyone.
  • Teach neurotypical people about autism.
What kind of support or resources have been most helpful to you as an autistic person?

My bubble tube, my tablet, my electronics, my trampoline, my swing, Spectrum Gaming.

What advice would you give to someone who has recently been diagnosed, or to their family and friends?

That it’s going to be ok!

Jess, age 41

Jess was identified at age 40 as AuDHD. She is also a parent to neurodivergent children, MA Autism student, teacher, founder of GROVE Neurodivergent Mentoring & Education

How has being diagnosed as Autistic impacted on your life?

It has allowed me to look at myself, my past, my future with kinder eyes.

I am not difficult, obnoxious, overly sensitive, obsessive, picky, fussy, detached, distant, rude…  Rather, I am Autistic: steadfast, honest, hyper-empathetic, passionate, detail orientated, meticulous, an observer, an analyst, direct.

Being Autistic is an important part of my identity. And that is just fine.

What do you think are some of the most common misconceptions about autism?

The lens with which many people see autism is just wrong and this creates so, so many misconceptions.

When we are led to believe that we must view autism as a medical problem to be ‘diagnosed’ by the esteemed scientific medical community on the basis of ‘symptoms’ this inevitably leads to the notion that it is something to be fixed. It is no wonder therefore that autism is often viewed as a tragedy (Sinclair, 1993)!

So, the overarching misconception in my opinion is that we are people in need of fixing, changing, or curing. No good comes from this, not for the Autistic person anyway.

What do you think is the most important thing people should know about autism?

That unless you are learning, thinking, and talking about autism as difference not deficit then I’m afraid you are wrong. However jarring that might be.

Research shows that ‘more dissatisfaction with autistic personal identity predicted lower self-esteem, and more autism pride predicted higher self-esteem’ (Corden et al., 2021). If we want Autistic people to be mentally healthy then fostering a positive sense of self is essential. I believe that is possible even in the face of societal stigma and misconception.

What kind of support or resources have been most helpful to you as an Autistic person?

The Autistic community!

When my child was identified as Autistic, learning from Autistic people meant that I learned about him with the right lens – one of difference not deficit. In fact, neurological difference is a wonderful and very necessary part of our world. It also enabled us to put the right supports and accommodations in place to help him begin to flourish.

The Autistic community is also where I saw a mirror to myself, and I am forever grateful to Autistic people sharing their lived experience for enabling me to find myself – finally!

What advice would you give to someone who has recently been diagnosed, or to their family and friends?
  • Learn about autism from the Autistic community:
    • Challenge your own preconceived ideas, let go of what you thought you knew;
    • Look in particular at Monotropism and the Double Empathy Problem;
    • If you are a parent/carer to an Autistic child/young person, then support them to learn about their Autistic identity in a neuro-affirming way.
  • Connect Autistic people with other Autistic people.

Helen, age 45

Helen developed Autistic Realms to advocate for a better understanding of neurodivergence and mental health in education. Visit here to find out more: www.autisticrealms.com

How has being diagnosed as autistic impacted on your life?

I have an improved understanding of myself and my children who are also autistic, everything I thought was ‘wrong’ or a difficulty is actually just a different way of being. It is ok, I am learning to turn the narrative around and give myself more time and space in the right environment with people that understand. All the things that trigger anxiety and overwhelm can be made much easier once you start to view life through a neurodivergent affirming lens. It helps as a family that we are all on this journey together and have a shared and developing understanding of all our needs.

What do you think is the most important thing people should know about autism?

There is no single ‘autism’. Autism is not linear, it is multidimensional and fluid, it is a unique way of body minds responding, interacting, and communicating with the world. Regardless of differences in neurology, everyone’s physical, sensory, social and communication needs are different, for autistic people these differences may have a more intense impact.

Autism is not an illness or a disorder, it is a different way of thinking and responding. I feel it is important to value differences by developing good relationships with people, especially in school settings for young people. Unless people understand individual needs and the impact of the environment then they cannot make changes to enable more positive outcomes and to support good mental health.

How can society be more accepting and accommodating to autistic people?

Generally we need more understanding and acceptance of all differences in society. For autistic and disabled people I would argue this is more important as the barriers are higher.

If non autistic people understood autistic differences are not deficits it would be a start. Autism is not a disorder and people do not need to be ‘treated’ or have ‘interventions’.  There may be co-occurring conditions and needs that need extra support but most difficulties occur due to either a lack of understanding with people or environmental and sensory factors.

What are some misconceptions around autism?

Stimming – helps regulate the senses (it should not be stopped or inhibited).

Meltdowns and shutdowns – are caused by the environment (sensory / social) not meeting needs and so people can no longer manage. If autistic people experience meltdowns and shutdowns, it is because they have gone past their capacity to manage a situation. With more understanding this overload would not be as intense and not happen as frequently.

‘Restrictive or repetitive behaviour’ – special interests and hyper focus needs to be embraced. Monotropism is thought to be a core element of autistic identity. If we embrace monotropism we embrace a flow state, it allows deeper thinking, it is predictable, calming and joyful. Extra time and support may be needed to support and enable redirection of attention  / transitions / executive functioning onto other tasks but this again is down to time, space and those positive connections with people that need to be compassionate and understand the need for flexibility.

Social and communication difficulties – what may be seen as antisocial may be the environment not meeting need, not the right means for communication to take place (are people more comfortable texting / email / talking / small or large groups / 1:1 / do they need an alternative method of communication? In the right environment and with the right people autistic people may be very sociable in their own way.

What advice would you give to someone who has recently been diagnosed, or to their family and friends?

Join a neurodiversity affirming and neurodivergent friendly support group. There is an amazing online community and reach out if you need support.

Katie, age 32

Katie documents their experiences as an Autistic, ADHD, OCD, Queer person living in the UK over on Facebook under the name Autistic and living the dream. Visit their page here: https://www.facebook.com/autisticandlivingthedream

How has being diagnosed as autistic impacted on your life?

Being formally diagnosed has allowed me to understand myself and to put into place things which help me. It has given me the validation and permission I was looking for to be kinder with myself.

How can society be more accepting and accommodating to autistic people?

Listen to Autistic people, even when we share things which aren’t in your sphere of reality or experience. If someone says it’s too hot / loud / confusing, believe them!

It is really difficult to advocate for yourself so please listen to us when we do this.

What kind of support or resources have been most helpful to you as an autistic person?

Online Autistic spaces and communities. I have learnt so much about myself through other Autistic people’s experiences. I love that we are creating our own resources, in lots of different, more accessible and accurate ways.

How do you think autism advocacy can help people better understand and support autistic people?

Through sharing and listening to stories people can understand our experiences and how to support us. They can understand the deep joy and sadness which often comes with being Autistic, especially living in a society which doesn’t work for us.

Advocacy is also important for Autistic people and our communities; we can finally see ourselves reflected in stories and experiences of others. There is a community connectedness there which is really important for mental health.

What advice would you give to someone who has recently been diagnosed, or to their family and friends?

Breathe. Know that it fundamentally does not change you as a person. You will have lots of different (and possibly very strong) feelings about your diagnosis. That is okay. You may also start to look back and things will start to click into place. Be gentle with yourself, give yourself time and space to process this. It can take a while. Be careful if you begin to be more open with your Autistic self, most people are nice (even if they don’t really understand) but some places and people can be less so. You’ve got this.

Useful resources

Autism resources Padlet

Here is a Padlet full of affirming autism resources which is updated regularly.

Learn from autistic people

 

Other recommendations from autistic people

 

Monotropism

Learn about monotropism, an important theory of autism.

Autistic Not Weird

  • This website provides information around language to use when talking about autism

Future Learn

National Autistic Society

 

NHS England

 

Spectrum Gaming

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