​Language is important and it reflects how society perceives and understands something. Language also  changes and evolves. We have the power through our language to influence attitudes towards autism as well as impacting a person’s self-identity. Language can also both stigmatise or empower autistic people.

Terms that were once in common usage such as “High Functioning”, “Aspergers”, “Autistic Levels”, and “Severe Autism” have become less accepted by the autistic community. For decades, language surrounding autism has evolved and using these terms can lead to the autistic community feeling unseen. It reinforces harmful stereotypes that the autistic community have worked hard to disprove.

Your Voice has engaged with the autistic communities across the South West, we have heard how the use of these terms and words are still effecting the lives of autistic people. They have been used by those in health and social care, and as these workers are deemed to have expert knowledge, interactions with them can feel unsafe or even harmful. Because of the misuse of language to describe autistic people, health inequalities are formed.

Autism is a spectrum condition, meaning no two people on the autistic spectrum are the same and everyone has various needs, and ranges of support required. This is why the autistic community disregard the terms ‘High Functioning’ to ‘Low Functioning’ or ‘Very Autistic.’ These terms are not very good at describing the variety of needs an autistic person experiences. Categorising autism in this way, is based on how society views autistic people and how they function in society. It does not take into consideration the autistic ability to be able to mask struggles and difficulties.

Masking should not be trivialised. It is the process whereby an autistic person supresses their natural behaviours, emotions and communication styles in order to fit in with society’s norms and expectations. Masking can be learned at an early age and is quite common in autistic women and girls.

Masking also has a huge effect on a person’s state of wellbeing and has many long-term effects. Mental and Emotional Exhaustion is a large side effect of masking due to how emotionally draining it is. Many autistic people have increased anxiety and depression to the overwhelming social interactions and energy required to mask. 

It is harder for an autistic person to recognise and embrace their own self-identity due to masking, this is why it is especially important for society to accept those on the autistic spectrum to create a welcoming environment for self-acceptance and self-nurture.

Someone who society might consider as ‘high functioning’ may have difficulties in other areas of their lives which society does not see. They may need support in order to manage and understand complex emotions, changes as well as everyday tasks and living and support to stay in work. The perception that someone may be ‘high functioning’ may stop someone from seeking support in the areas that they do need help. For example, in a meeting with a health care professional, an individual was told ‘You’re high functioning and you don’t need social support.” 

This presumption the health professional made is entirely based on how the individual presented. It is wrong and had a significant impact on the person’s ability to have the right support and the ability to gain support in the future. They did not pursue a referral for social care support, as this health professionals comment made them believe their social struggles were not significant enough. Years later, they found this not to be true and at this point they were in burnout due to the effect of not having adequate support. This meant that they had to continue struggling due to the impact of the terminology used in the meeting.

The Your Voice network is full of people who would be considered ‘High Functioning’, yet the health inequalities they face are significant. Those who are often considered to be “High Functioning” are autistic women and girls who often adopt neurotypical and socially acceptable ways to fit in and mask their natural selves.

Finally, language used to describe autistic people, is more than terminology, the tone and framing around autism can reinforce harmful and negative stereotypes that the autistic community have tried to disprove. The impact of the wrong terminology especially if used by those used in the medical profession is huge and can lead to health inequalities and ongoing mental health issues from the cumulative effects of misunderstanding.

Autism, cannot be ‘fixed.’ We should encourage those to emphasise the strengths and talents of autistic people and the huge diversity of the autistic spectrum which in turn, can promote a positive perspective.

Language plays a critical role in shaping society’s narrative about autism. It is also important to listen to those on the autistic spectrum and respect their preferences around the language as everyone is different.

By using the language, which is inclusive and accepting, it honours those with the lived experience of the condition and can create a society where autism is understood, accepted and celebrated.

Masking is something that people with learning disabilities and those who are neurodivergent do. People can also do if they have mental health conditions. There tends to be more of a link and awareness between masking and the autistic community than other disability groups.

As a person who is neurodiverse, with several mental health conditions I know that masking is something that I do consciously at times. People without autism can mask for similar reasons depending on the individual and what condition they have.

As an advocate for disability acceptance, I recently have tried to stop consciously masking, this is difficult as I cannot seem to keep up with the demand of what neurotypical people expect. I feel the need to accept myself and be a good example for the community. Sometimes I mask because of the lack of understand about my condition from others, I have been bullied for things I couldn’t help because of my disability. I have struggled to feel included in some situations.

Other reasons why I might have masked are: keeping up with workload, not understanding information, being labeled as different and maintaining friendships.
I used to sit with the clever people at school so they could help me with my work or I could copy theirs. I learnt to mirror their behaviors to fit in. This saved me many detentions. I have learnt from others that if you look like you are actively taking in information then you don’t get in trouble.

I used to nod and say agree to what people were saying but I didn’t really register half the information being said, this helped carry me through school.

Soon, people began to realise I was slow and that they could do things better with out me rather than make adjustments. I began to find real connections amongst minority groups. Sometimes I still find myself drawn to academically clever people, hoping to learn something and catch up. Realistically I know this is harder for me because of my learning difficulties.
 
I have found some strategies to get round things or avoid situations to help me cope. This can in turn mask my struggles. My obsessive compulsive disorder has developed as a way of my brain trying to cope with my functional issues and sensory overloads. I believe that if I didn’t have OCD than my chance at an independent life would be harder.
My struggles are more noticeable when I get fatigued, before people have mistaken it for a depressive state but it is more to do my brain’s function. In my own environment that I am happy with, I can seem much more capable because I have adaptions in place. In a place where I wasn’t so comfortable rather than ask for help and expose the extent of my disability I would make excuses for it rather than admit I was disabled.

Sensory toys can be helpful to get you calmer although they do come with a stigma. They can also mask the fact that you are unable to cope and express your emotions typically and communicate as effectively as you would like.

This can help you avoid unacceptable behaviors. When you have to mask it can feel pressurizing and it has made me want to isolate and take myself to bed at times when I am overwhelmed.

I am now using walking aids and exposing my disability to others, my fatigue can get so severe that I go floppy and struggle to chew food or talk. My dexterity and coordination issues are so heightened that the motor dysfunction can also be severe.

​It can be my choice to stay at home or to take a wheelchair. In the past I may have chosen to stay in bed, but now I am happy advocating against people’s assumptions and stereotypes of disabled people. I believe some attitudes towards disabled people are changing but there is still a way to go.

Neurodiversity Celebration Week is a worldwide initiative that challenges stereotypes and misconceptions about neurological differences.​

In celebration of this, our latest blog recognises that there is continued confusion about the term Neurodiversity, and we help to decode some of the terms that are often used.

It is brave to be uniquely yourself, it is a path of discovery to learn what makes you happy. It is courageous to let others see who you really are. This concept hasn’t been easy for me, I was diagnosed with autism at the age of 17. This was a relatively late diagnosis but on reflection some ways I always felt different.

Throughout the last 7 years, I have learnt to embrace these differences. The biggest skill I have learnt is the ability to love myself and let others love you for who you really are.

I am no longer afraid of the differences. As I adapted to make things easier for myself, family and friends have adapted too. Of course, there are challenges from people who are not willing to understand. I think this will take time for society to embrace neurodiversity. Autism understanding especially in women and girls is so much more developed from when I first got diagnosed 7 years ago.

Autism is remarkable in the sense that it enables me feel joy through my selected interests. It is a feeling like I can’t quite explain. Throughout my childhood I went through different selected phases, The Little Mermaid, High School Musical, Hannah Montana and the latest Once Upon a Time. When I am anxious I spend my time flicking through EBay or Vinted to check the latest Once merchandise. Now I have a huge collection of Once Upon a Time merchandise and The Little Mermaid figurines, I have it on display in my room and it makes me incredibly happy! I rewatch the series every day to the point where I know each and every word of every episode. This gives me a huge sense of calm. The predictability is reassuring and nurturing.

Ever since I was little I have expressed myself when I was excited through the raising of my hands and a little grimace. It feels like electricity running through my body. To be able to have that feeling and experience that joy is a feeling like no other. Sharing my joy with family and friends is also special. 

​As well as feeling the highs of autistic joy, I can also feel overwhelmed. I find it tricky to navigate and understand my different emotions. I refer to it as my brains holes being blocked. The processing stops. I have learnt over time to unpick this slowly to work through the different elements of what is worrying me.

Although I didn’t recognize it when I was younger, I had different sensory needs like the sensitivity to loud noises. I used to dread when someone recommended watching a firework display. I used to think to myself “how can anyone enjoy this?.” I thought I was strange as other people watched on in amazement to the glistening lights in the sky.

That is why I think it is so important to be a self-advocate to educate others on neurodiversity so autistic people have the same opportunities as neurotypicals as autism has so many positivity's.

​We want to create a world where autistic people thrive and feel like valued members of society. Our thoughts and feelings are valid and valued and we would like to share them to create better equality, unity and inclusivity.

For so long Autism and Neurodiversity hasn’t really had a place in service provision and health care. Autism has been misunderstood and that means that autistic people’s needs aren’t really met. Many services still use the term ‘leaning disability and autism’, which initially meant people with co-occurring Learning disabilities and Autism, this meant that Autistic people without a learning disability had nowhere to go and ask for support or have their voice heard.
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While it does now include autistic people without a learning disability, the needs of people with a learning disability and autistic people can be very different and these services aren’t necessarily set up for Autistic people. Therefore people can feel forgotten and that their rights don’t exist. It creates barriers that make day to day life difficult leaving many autistic and neurodiverse people feeling alone, unsure where to go for support and isolated. However it also has a more serious effect on their quality of life, and ultimately life expectancy can be decreased. So we need advocacy, peer advocacy and self-advocacy to help us make sure our voice is heard.