Mark’s point of view:
This is a review of the two Chris Packham programmes on autism, which were documentaries entitled “Inside our Autistic Minds”, from my own point of view, and that of my wife, a friend, and my carer.
Please do take the time to read this article as I wish to support the BBC and this is my way of thanking them and the other people around me by giving them the opportunity to share their thoughts, feelings and personal experiences
I have been reassured that it is a therapeutic exercise.
I found the two programmes and the four very brave people besides Chris Packham very encouraging. Although knowing that I’m not on my own with my autistic life experiences and challenges, it was comforting in a way to be a part of this community. There were times during these programmes which I really related to and which touched me quite deeply, even reducing me to tears, knowing full well that I’d been through that, and that if I could, I would stop anybody else having to go through such a painful growing and learning experience. I watched these programmes with my wife and also my carer.
I am delighted with the programme’s contents and although there are similarities between the four people and myself, there are also vast differences. My hope is that the BBC would continue to find more people with not only this condition, but others to bring knowledge and encouragement as well as information for support and caring organisations. We live in a fast, noisy , chaotic world and if I could I would stop this, slow it down, turn it down and bring some order and therefore hopefully peace.
It was a pleasant surprise to me that the four participants had been given a voice, partook of the opportunity and have grown and moved out into a wider aspect of life and the community with the family and community around them having had such an informative experience to be helpful and understanding and more mindful, not only of these four individuals, but also for other people in the wider community.
Jacquie’s point of view:
I watched the two documentaries “Inside our Autistic Minds”, presented by Chris Packham, with my husband, Mark, who has a diagnosis of Asperger’s. It was interesting to hear how autism impacted the lives of the four individuals featured in the programmes, and to compare their stories with my experience of being married to someone who is on the autistic spectrum.
Mark was diagnosed in his mid forties, and we both found that the diagnosis helped to make sense of the difficulties he had experienced throughout his life. Once the diagnosis had been made, we began to better understand why certain events and experiences triggered strong reactions, meltdowns and shut-downs. We started to think more carefully and intentionally about adaptations we would need to make to help him feel less anxious and more at ease. We worked on creating a more comfortable, stable home environment for him, reduced the number of challenging (to Mark) situations in his life where these were within our control, and tried to start looking for opportunities that Mark could engage in which enabled him to use his strengths and achieve things which boosted his self-esteem and confidence. He has a valuable contribution to make in life with his unique characteristics, and we have been working ever since on helping him to accept his weaknesses, whilst bringing out his strengths.
Episode 1
Like the lady featured in episode 1, Mark has not felt able to talk to his mum about his difficulties. She does not know that he has a diagnosis of Asperger’s, and he worries about what she would think, should he let her know. He is comfortable talking about things that interest him when he is in his comfort zone, but becomes exhausted by social interaction, where there is a give and take in conversation. Like the young lady, Mark has times when he completely shuts down, feeling overloaded and exhausted, and he has great difficulty coping when situations do not turn out as he expected them to.
Like the young man featured in episode 1, Mark has a difficulty asking others for help when he needs it (although he can speak, and is very eloquent at times). Mark really appreciates it when others are willing to listen to him and hear his story, when he is given a voice and an opportunity to share things from his point of view, and when people make the effort to understand and accept him.
Episode 2
Like Chris Packham and the first young man featured in episode 2, Mark suffers from sensory overload. Sound, visual stimuli, smell, taste and touch can all overwhelm Mark’s senses. When he is in an environment which overstimulates any or all of his senses, he is unable to focus or function effectively. He just wants to escape, to get out, to go somewhere safe and quiet, to bring calm and order to his mind. In these situations Mark cannot concentrate on the simplest of tasks because dealing with sensory overload is all-consuming. It is for this reason that he struggles to cope with busy environments and small spaces, anywhere that can make him feel trapped, without an escape route should he need one.
Like the second young man featured in episode 2, Mark has great difficulty dealing with changes in routine, and things not happening at the right time. He understands mentally why things may not happen on time, but he cannot cope with the impact it has on him when timings don’t work out, for example when a bus is late, or a GP or hospital appointment does not happen at the allocated time. He becomes distressed when service providers are inefficient and when errors are made, even though logically he knows this is (unfortunately) an increasing problem due to under-resourcing in both staff and money. Any of these incidents can impact on Mark’s mental wellbeing for hours or even days or months, depending on the importance of the event in the first place. He functions at his best when he has structure and routine, as these help him to feel safe and in control (of himself).
Like all the parents, family and friends who heard the stories from an autistic individual’s perspective in Chris Packham’s documentaries, I learned and understood more as a result of hearing the explanations given by Chris and the four individuals featured. My experience to date has so far been that there is always more to learn!
JW’s point of view:
I’m writing this from the perspective of a mum with a son in his early thirties with autism. He wasn’t diagnosed until his mid twenties, and this was a huge relief to all of us, as we finally understood what had been causing him difficulties throughout his life. Although he has what is described as “mild” autism (or “Asperger’s”), I can honestly say that it has affected every aspect of his life. He has difficulty with social interaction (although this is getting better), likes to stick to strict routines & doesn’t enjoy spontaneous events. Perhaps the most debilitating thing is his sensory issues – lights, sounds and even smells can affect him much more than they would a neurotypical person.
When I watched the Chris Packham programmes, I was very struck by the mums who were sometimes unaware of their child’s problems. I myself feel quite guilty as if I had known more about autism when my son was younger, a whole lot of problems could have been avoided, & my husband and I could have been so much more understanding of his difficulties. However, our lives have been totally enriched by his unique and creative way of looking at the world, and I would not change him at all (except to say that I wish he didn’t find life so hard sometimes!)
Watching the programme made me aware of some of the adjustments that we make every day to help things go a bit more smoothly. We have had to adjust our expectations somewhat, as although my son is making great strides and becoming more open to new experiences and people, he is still quite far adrift from other neurotypical people of his age. We are hopeful that one day he will live a fulfilled, independent life, and he has certainly made a good start this year, with volunteering at a local charity and learning to drive. Thank you for allowing me to voice my feelings and thoughts about autism. I would recommend that everyone watches these programmes to gain an insight into the lives of people on the autistic spectrum. It’s a hidden disability, but one that affects so many people.
TH’s point of view:
I have recently started working as a support worker alongside someone who is autistic. As in any relationship it takes time to develop a meaningful, productive and successful team. Autism definitely adds another dimension to this learning process. It’s important to be mindful of the particular autistic traits and behaviour of the individual. Gaining insight and being aware of how their thought processes work and impact on their daily lives is really valuable for good communication.
As I watched the programme, it highlighted to me that although there are some key and typical signs of autism, it’s also unique to each person. Certain situations can be particularly challenging or trigger most distressing reactions with varying degrees of intensity. I have noted several occasions already working with Mark (my client) where he’s found the environment or situation difficult and potentially stressful. Ideally Mark would tell me of his anxieties at the time, but this may be difficult for him. It’s important that I’m aware this is how Mark is feeling so that I can take charge and take action to help him feel more comfortable and reduce any stress. As I spend more time with Mark, I’m getting a better understanding and becoming more aware of things that he finds difficult. This means I am more able to help him and minimise, or perhaps avoid, challenging situations. There have been several occasions with Mark, for example, in the CeX shop in Worthing, as well as during our trip last week to a café, when Mark started having the sense of being in a confined space, becoming overwhelmed and highly sensitive to the environment. In the CeX shop a complicated transaction and technical information further accelerated a case of ‘information overload’. It is my priority keeping Mark safe, and to make him feel he is safe. At times like these, Mark, if he feels up to it, can voice his anxieties and remove himself from the situation or environment, finding somewhere quieter or just being outside and getting some fresh air. On days where it’s more difficult for him to do that, it’s especially important I am intuitive and can sense or foresee any activity or interactions that are likely to bring on any anxiety.
Autism can be a somewhat ‘hidden’ disability and may not be obvious to those around them. Thought processes may often be more complex or involved for an autistic person. They may have to take more time and make more effort to make sense of their thoughts or feelings as well as expressing them to someone else. From watching the programme and working with Mark it seems ‘planning’ is an extremely important element to living their daily lives. A break from routine, planning a trip (especially to somewhere new), driving a different / unfamiliar route, a change of plan or things happening unexpectedly, can all be especially difficult or stressful. Other people may take it for granted and not give it much thought if they needed to pop to the shops and run some errands. However for someone with autism, it is likely to take a lot more thought and planning, as well as energy and time. They may carefully consider all details, however seemingly small, and possible scenarios that may occur whilst away from home (for example, remembering to take everything, thinking about parking, whether the person they know and they’re familiar with is there to greet them, working out timings and how long things will take etc). I guess this somewhat meticulous planning is a way of dealing with change or upcoming events, helping reduce feelings of apprehension, anxiety or stress.
Mark's final thoughts:
I found the programme interesting and it gave useful insight into how autism may impact on people. It’s helped me further my understanding and was beneficial to my ongoing learning.
I hope you found these reviews useful and if I could, I would thank the reviewers, Chris and everyone involved.
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