Chris Packham, a television presenter who I grew up watching and who I still enjoy watching when he presents the likes of Spring watch and Autumn watch recently made a documentary with the BBC about his life with Aspergers. (You can read about this here)
I sat and watched this with my husband and with J, who is 13, an animal lover with an ASD diagnosis. It made for interesting viewing. To see how Chris managed his condition without even fully knowing or understanding what his condition is was inspiring. I was saddened watching him explain about his friendships, or lack thereof, and to hear him making the realisation that he would succeed in education so long as he refrained from speaking to people. So much of this seemed to ring true for J and is part of the reason behind our decision to home educate.
J has much more of an affinity with animals, he admits that he has a general dislike for people, for humans generally. He likes that animals do what they need to do to survive but rarely are mean and cruel to each other just for the sake of it, a trait which seems all too common with people. Sure you can argue that foxes are cruel to chickens just for fun, I have heard tales from farmers to suggest this, but foxes don’t pretend to be friends with the chickens to serve their own purpose and then turn on them or be mean to them without their knowledge do they? Generally if a fox is in the hen house, then we know they are up to no good. People aren’t quite as transparent.
J is learning some of those skills needed for successful social interaction, he is beginning to grasp when people are joking and winding him up, he is more able to tell them to shut up and go away rather than losing it with them. Sometimes he tries to return the banter, on occasion he manages this very well, other times it doesn’t go down so well and every now and again someone gets really upset with him. Its a constant curveball for him as people come and go from our lives and everyone has their own humour and tolerance levels for him to navigate. I can see why it would be so easy for him to shut himself off.
It was interesting to see how Chris came into working with the BBC. He made a list of things that he needed to do, and those which he needed to not do. He went for the job because his sister suggested that he should get paid for talking about animals to people other than them. It was also mentioned however that he motivated the family to get involved and to know more and be more interested in animals, wildlife and nature than they would have been otherwise, that he inspired them, and this was viewed as a positive. I can definitely say this is true in our families case as well. Through Js interest we have been working on the Wildlife Challenge with the RSPB, we have Woodland Trust membership and do seasonal activities for that, we have taken part in the give nature a home initiative and have enjoyed many a walk admiring the change of seasons and practised photography. These and many more are activities and experiences that we may have missed out on if not for his keen interest and passion.
We have said on a number of occasions as a family that we could see J working in television. He has a wealth of knowledge and retains information that he then loves to share. It was positive to see that even with the social struggles and quirks, that Chris has made a very successful career. He has managed to form and maintain relationships successfully over the years, he still has a lovely relationship with his step daughter from a previous relationship and has been with his current partner for over 10 years. This is positive and promising, such a valuable insight to reassure children, young people and parents all over! J found it strange that having been together for 10 yrs Chris and his partner still do not live together, this proved an important lesson for him about variety and what works for some doesn’t work for all. Something that really he should be all too aware of, their relationship is clearly working. J is surrounded by couples who do live together, It is the norm for couples to move in with each other, So this documentary provided an intriguing alternative.
During the filming Chris went to America where he visited an education centre and talked about the search for a cure for Autism. Of course earlier on in the program my husband had raised the issue of those on the other end of the spectrum, Chris has Aspergers and so is quite high functioning in many ways, at the other end we know that there are those who are non verbal and who are affected in much bigger ways. I figured that to see the world from Chris’ perspective was insightful as to look at him you wouldn’t know anything of his inner struggles and in the same way that J struggles, people then expect far more than they are able to give. During the part of the program where Chris was in America I found it saddening to see how Autism was viewed and compared to a cancer, something that needed to be treated and cured with “educational chemotherapy” Having watched loved ones suffer and lose their battles with cancer I felt this was an appalling and disgusting comparison to make. J was confused by his thoughts, we needed to talk it out a bit. He could understand why some people would want a cure, of course being aware of the massive variety of ways and extremes that people are affected by autism it’s not hard to understand why there is a demand for research into a cure. But for J, much like Chris, it is the acceptance that those ASD traits, while tough to live with at times, make them who they are.
I felt it was very positive that alternatively the role that people potentially with Autism have played in the development of huge organisations such as Google, NASA and Microsoft was highlighted and praised. There was a brilliant example of employment, allowing applicants to demonstrate their capabilities across 5 days to take away the stress of an interview scenario that can cause so many ASD young adults to falter at the first hurdle and a brilliant interview with a Microsoft employee with ASD.
These programs do such a fantastic job of informing people, reassuring people and inspiring people. To have it placed right in front of us….. look at this struggle. Look at how his brain works. Look at that sensory overload. Anyone who would look at him just wouldn’t know. It’s the same for J. He related to so much of the program and it was brilliant to have it explained so clearly. Because J isn’t good at putting it into words at times. The first anyone would see of anything being “wrong” with J is when a meltdown happens. When I am having people complaining to me about various behaviours without understanding the trigger. A trigger which usually following a discussion with someone else present I can pinpoint pretty quickly. It doesn’t always seem like a lot.
I would ask anyone who finds themselves confronted with a meltdown, or not even a full meltdown….. those awkward, rude and tricky traits that usually for us preempt a meltdown….. Not just with J, but with any young person with ASD, don’t just think about what has directly been said, or done. Look at the whole picture. Lights, colours, smells, sounds….. is it a familiar place, is the young person comfortable? Are their clothes ok? You see so much of these senses people often ignore, But to people like J, they can be huge factors.
You may see the young person with no eye contact, with no speech…. maybe making loud noises and shouts, maybe flapping or signing. You would look, you would know and there would be a level (albeit a very small amount) of understanding. This person has “special needs” this person may struggle.
Spare a thought for those who at first glance appear “normal”. Offer patience, kindness and understanding. For Chris, for J and for everyone. You never know what battles someone else is fighting.