“For me being autistic is not some kind of weakness, there’s nothing wrong with autistic people, we’re just different.” – Chris Packham
I recently had the pleasure of watching a two-part programme about autism which was presented by Chris Packham. Chris is probably most well-known for his naturalist work and TV programmes but with a diagnosis of Aspergers himself, which he shared publicly in 2017, he is someone who can talk both eloquently and passionately about the subject of autism. I have a particular interest because as well as having Wolf-Hirschhorn Syndrome and a severe learning disability, my son James was also diagnosed with autism in 2008.
Chris opens Episode One with him in what we perceive to be his familiar surroundings of the forest. He begins by describing what many of us see as a typical woodland scene but he goes on to describe to us exactly what he sees and it’s fascinating. What many of us won’t have realised is that he sees it in far greater detail, every trunk, every branch, the shapes, the colours, the leaves and every bit of damage to those leaves etc. He explains that as a naturalist his ability to see in such detail can be beneficial but his visual ability can at times be overwhelming.
This programme got me there straight away, I was gripped already and immediately found myself thinking about how James sees the world around him. It’s easy to assume that we all see things the same way, that he sees what I see and clearly that’s one assumption too far already.
Staggeringly, estimates suggest that there may be 700,000 autistic people in the UK. Whilst there are many common traits, every autistic person has their own unique set of strengths and challenges, there is no one autistic experience. Chris speaks movingly of having received many letters from lonely, miserable and suicidal people with autism who feel the world doesn’t understand them. They feel excluded and that they don’t fit in and just hearing that makes me feel sad.
Across the course of the two programmes Chris meets with four autistic adults who experience different challenges during their daily lives living with autism. With each one I was thinking about James and what aspects of his life are affected most by his autism.
Flo
Chris met the first, a young lady named Flo in a pub. He said himself he was not a fan of pubs and busy noisy spaces and you could sense his unease. Flo explained that she has spent a great deal of her life ‘masking’ and feeling she had to hide her true self even from her mum and those closest to her. Masking is when autistic children and adults consciously copy the behaviour and mannerisms of others. They do this to try and ‘fit in’ and to cover up any behaviours and mannerisms that society deems as unusual or not acceptable. This can often lead to isolation and Flo talks about this being exhausting, the need to constantly try and behave differently to be accepted. As a result of her constant masking Flo wasn’t diagnosed with autism until her early 20’s but looking back through childhood photos where she would often be alone or not engaging with others it was clear to see that she was struggling.
Flo and her husband recalled an incident in their car which Flo found particularly challenging and when it’s broken down and you think it through it’s not hard to understand why. They had left home to go to the supermarket one evening, her husband had forgotten that they had said they were going to Tesco and instead he drove to Sainsbury’s. During the journey Flo was preparing herself for what she describes as the “horrific sensory overload onslaught” of the supermarket. She then realised they were not going to Tesco. Flo became so distressed she went into ‘shutdown’. When an autistic person reaches this level of anxiety, they can feel so overwhelmed they are unable to process or express their thoughts. She was unable to tell her husband how she was feeling. On reaching Sainsburys, Flo’s husband had to go in alone and now most often Flo does not go to the supermarket.
Hyper-Sensitivity
Shops are commonly a very difficult environment for those with autism. They bombard you with lights, colours, sounds and smells and for anyone with a sensory processing disorder like autism the environment can be just too much to cope with. In Episode Two Chris discusses this with a lecturer and autism researcher from Sheffield Hallam University. Using the example of a large indoor market Chris asks why this sensory experience is so different for a non-autistic person. The answer was this, “in this environment your primary senses are picking up on all the external stimuli, the brain filters this and a non-autistic person ends up with a conscious understanding of the environment. A non-autistic person is able to block out some of the external stimuli and not be aware of it, i.e. certain sounds or smells. Whereas autistic people have a heightened awareness and are unable to filter out this onslaught of information. This can have a significant consequence for example in someone who is hyper-sensitive to smell, the smell of perfume or fruit may be enough to make them vomit”.
Again, as I listened, I reflected on the meltdowns James has had in supermarkets, most often in the queue waiting at the tills. I can say with all honestly, I’ve never really thought much before about how all that noise and visual stimuli was affecting him. Of course, it doesn’t mean we can always avoid it but I feel I understand it more and feel the particular issue people with autism experience in these kinds of surroundings was explained really well in the programme.
Murray
The next young man Chris met was Murray, who is actually the son of Radio 2 DJ Ken Bruce. Murray is non-speaking and has never spoken. He is very intelligent and is able to express his thoughts by typing them. This can take some time as he also has apraxia which affects his fine motor skills. Murray can become anxious with new people around and, as he is also sensitive to unexpected noise, he sometimes wears ear defenders to help block out the noises he finds troublesome. Murray has expressed that “he feels frustrated at hearing others around him speak and he cannot respond instantly” and also that “people think because he doesn’t speak that he has nothing in his brain”. As Chris said, “People look at others and make a snap judgement.” It’s wrong but sadly true.
Chris explained that “more often if an autistic person has no speech, it is because they also have a severe learning disability.” He said, “that for a non-speaking autistic person to have Murrays’ level of intellect and his ability to type was rare.”
Alternative Ways to Communicate
Chris then visited Freedom Active day centre. Here staff were using various means of communication with their service users that I am familiar with. Cards, pictures, symbols, signing, gestures and electronic aids all had a role to play. One young man was working with picture cards. Staff were requesting a picture card with a specific item on it and the young man was able to demonstrate his understanding by handing over the relevant card. This reminded me very much of James as his level of understanding and his knowledge and recognition of things around him far surpasses his ability to communicate. Chris said, “wouldn’t it be great if everyone had a usb port and you could just stick something in and read their minds.” If I had a pound for every time I’ve wished I could read James’ mind!!
Next week I shall reflect on the second programme and discuss the other two autistic adults that Chris met. I will look in more detail at the particular issues that Anton and Ethan both face living with autism. We’d love to hear your thoughts too. Please do contact us to share your views.
Thanks for highlighting this. Really appreciated the opportunity to watch and learn.
Thank you Meta. Me too, I found it fascinating and very informative.