Autism and the reality of inclusion
Most of us in the developed world have the luxury of being able to go anywhere in the community, whenever we want to and with whomever we want (time, money and Covid restrictions notwithstanding!). For those living with autism, real inclusion in community activities and events can be far more challenging.
Autism is a lifelong disability that affects how people communicate and interact with the world. All autistic people have difficulties with communication and social interaction, many also have sensory issues with noise, smells, and bright lights, which can be painful and distressing. They can also experience intense anxiety and extreme unease around expected change. All these challenges must be considered and ideally prepared for before an autistic person ventures into the community.
In addition to these difficulties, there is also the complexity of social understanding and acceptance. Autistic behaviours such as flapping, vocal noises, and repetitive actions known as ‘stimming’ can be alarming to someone that has never experienced it, and typically these behaviours become exacerbated when the autistic person becomes excited or anxious. In certain situations where people are expected to be quiet such as at the cinema, theatre, library, on public transport, or at the local pub quiz, these behaviours can be distracting and even irritating to those not affected by autism. Whilst the autistic person may or may not be aware of the negative reactions of others, without doubt their loved ones or carers will be, and that can deter them from supporting autistic people to integrate with their local community to expand their horizons and build important relationships.
My 18-year-old son Lynden is autistic, he has a severe learning disability, and is very sensory. The odd thing about sensory issues (and this is a mum's perspective, not a clinical one) is that Lynden’s reaction to a stimulus can differ hugely depending on the day, the situation, his mood, and who has triggered it. For example, Lynden can struggle on some days with the noise made by others, particularly his peer group, but gosh he can make enough of it himself! Often, we will have devices on at full volume in every room of the house and he will be making lots of his own verbal, but unintelligible noise in response. The difference for him is that he can predict and control his noise, he can’t do that with the noise from others and that makes him anxious. This makes it difficult to know whether a new experience in the community will be a huge success or an outright disaster, and we’ve had our fair share of both!
Accessing the community is so important to both of us, Lynden loves being out and about, and I am passionate that he gets to enjoy a rich set of life experiences - it’s just not always that straightforward to achieve. So, for example, l bought tickets to take him to see ‘We Will Rock You’ the Queen musical, which in theory Lynden would adore as music is one of his favourite pastimes. However, I knew there would be the challenges of the loud noise, an unknown venue, the height of the seating (I could only get upper circle and he’s afraid of heights) and of course, the effect of his flapping, noises and stimming on people around us, that would be expecting to enjoy the show in peace.
Some theatres do offer ‘relaxed performances’ where the volume is quieter, the lights lower, and where quirky behaviours are understood and tolerated by other theatre goers. When the relaxed performances first became available, I was incredibly grateful, but the reality is those performances are few and far between,
and not necessarily offered on the shows we’d like to see. It also raises an interesting debate about what we mean by ‘inclusive’, is inclusivity really about offering a separate, ‘special’ arrangement for those with autism, or is it about welcoming them into mainstream community activities? The latter will only come as the awareness and acceptance of autism pervades society; it has come a long way in the 18 years that I have been on the journey, but our personal experience demonstrates that it still has a long way to go.
I am in an unusual and enviable position in my role as a marketing consultant for ECL, to help raise autism awareness and lobby for inclusion. I enjoy marketing ECL’s Inclusive Employment service and the work the team is doing to support people with learning disabilities and/or autism into paid employment. Even though it’s not a goal that is within reach for Lynden, I watch and admire the passion and dedication of the Inclusive Employment Consultants who make a real difference to the lives of individuals who can, and do want to work. So many of the candidates are attaining and sustaining real job roles that businesses need to fill, not just performing jobs that are specially created for them – that is genuine inclusivity.
As a mum, I also see it as my job to do what I can to improve awareness and change perceptions, if we hide away in fear of people’s reactions progress will be very slow indeed. So, on the night of the performance (having prepared in advance by watching the show trailer on YouTube and looking at photos and a seating plan of the theatre) we donned our ‘Autism Awareness’ t-shirts and ventured to the theatre. We had taken other precautionary steps such as booking end-of-row seats in an upper circle box to limit our impact on others and Lynden was armed with his ear defenders.
Apart from one encounter with an ill-informed usher (she will know better for next time!), the night was a resounding success. Lynden had the time of his life, I loved watching him enjoying the experience and a teeny bit of me was rather proud of both of us for overcoming the obstacles and making ‘inclusion’ a reality, even for just one night.
ECL offers Day Services and Inclusive Employment programmes across Essex to support adults with autism and learning disabilities to integrate with their communities, develop new skills, build support networks, and secure paid employment.
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