My mate Charlotte
Yesterday I had a distressed message from a great friend and talented outdoor colleague, Charlotte, who had seen a thread on an outdoor leader forum discussing how to work with some "disruptive" children in their sessions. One of these children was identified as having an autistic spectrum disorder (ASD). My friends upset was a result of some pretty terrible "wisdom" given through this thread, suggesting that parenting and disciplining of these children was paramount in this situation and that the outdoor leaders ultimately had little influence. Some other advice given, she felt was kinder and well meaning but still demonstrated a lack of understanding of ASD. This certainly triggered some outrage and sadness in my friend who works super hard to support her son who is awaiting diagnosis, and she knows he has already encountered more than his tiny life times worth of barriers, misunderstanding and judgement.
A quick bit of background
This blog is an exploration of some of the issues encountered when working outdoors with individuals presenting with ASD behaviours or diagnosis. It is important to also include, "presenting with", as well as "diagnosed with", as so many children and young people are on waiting lists, that may mean that diagnosis is months and more likely to be years into the future. There are also circumstances where a lack of awareness and understanding of ASD or a discomfort about having a label, may mean that no diagnosis exists, but behaviours persist. It is not unusual for adults to gain a late diagnosis as little understanding of autism existed when they were children. Women and girls have particularly slipped through the net, as early studies in the 1940's were only based on boys and more recently, Simon Baron-Cohen has led much research to suggest that ASD is an issue with an "extreme male brain". Thus, tests for ASD still rely on work where ASD symptoms are only, or largely measured against those experienced by males. I have also seen a rise in a related ASD, PDA (pathological demand avoidance), which does not always present as "classic" ASD and so is often missed or misunderstood. The saying goes, "once you have met one person with autism, you have met one person with autism" . As you can see we are barely out of the blog starting blocks and the situation is complex, edgy, political, gendered, frequently controversial and we are all still learning-there is every reason to keep an open mind here.
There is a bit (but not much) research being done on ASD and the outdoors and some (but not much) CPD available to raise skills and understanding in outdoor practitioners. I have been on some fantastic informative and well researched CPD on the subject of ASD outdoors and some truly shocking, potentially damaging CPD, all evidence that this area of study and understanding is still emerging. For many children, young people, and adults for that matter, being outdoors is an effective remedy to the indoor life of schools, colleges, universities and work places, that can bring so much discomfort and distress to some living with ASD. I will state right away, that I am aware that this is not always the case. There are of course individuals for whom, the sensory experience of the outdoors, the cold, wet. mud, wind etc. can just be a nightmare. Outdoor leaders would do well in this instance to be mindful of the fact that the outdoors, as much as they love it, may not be the best for EVERYONE, (another good friend and amazing outdoor leader Mel Kent has been brave and wise to gently remind me of this fact). However, anecdotally, many outdoor leaders report amazing levels of enjoyment, participation and progress for individuals on the autistic spectrum when in outdoor and natural environments. This is often backed up by teaching staff and parents, with reports of better behaviour, focus, mood and outcomes when back in the classroom/indoors, following outdoor time.
My outdoor education practice and research is largely concerned with increasing access and participation. In the main this has a focus on poverty and deprivation but I am generally concerned when we identify any barriers that we may be consciously or unconsciously putting up for anyone participating in outdoor experiences. Neurodiversity, of which ASD is a part, can pose as a barrier to participation to all kinds of activity including outdoor learning. Often, the biggest set of issues for those living with ASD are socially based. This is part of the reason why school, college and work can be difficult, as the reading and navigation of the social codes, social spaces, rules and guidelines of these institutions is confusing, exhausting and for some impossible. Working, learning and playing in the outdoors can offer an alternative to the social quagmire of school, college and office. Many outdoor groups can become a magnet for ASD individuals who are trying to find their tribe. Certainly groups that I work with are very high in the number of individuals who are considered by parents to be, or have a formal neurodiverse diagnosis.
Playing life in "Hard Mode"
Cynthia Kim, describes her life living with ASD as playing life in hard mode, and this I think is a great lens to use when considering what we are providing in our outdoor work with ASD individuals. On the surface they may seem fine and then get home and explode, they may seem fine until a threshold is reached and then explode wherever they are, they may seem fine but then not be fine with particular activities, games or requests, they may be fine with an activity or situation one week but then not the next, they may be fine with something that you as the leader have been told they would not tolerate, and so on. Child led, MUST mean child led when working with ASD children and in the same way, ASD young people and adults need lots of space and freedom to explore what will work for them that day, in that environment and what will not, without pressure or judgement. Whatever routines, or practices you have, be prepared to drop them or adapt them.
Blaming parents
It is sadly too often the case that parents are blamed for the behaviour and difficulties of their ASD children. This is a multiple injustice that all outdoor leaders/educators need to guard against. There is a common judgement cast upon parents particularly pre-diagnosis, that the style of parenting, discipline or perceived lack of, mollycoddling, marriage breakdown, financial circumstances, new sibling, working hours, etc. etc......insert judgement here...... is to blame. This is a problem experienced by so many parents of ASD children that it is now fully recognised and acknowledged in many articles and increasingly in academic research. A BBC article in 2017 explored just this issue; "One mother said she feared being reported to social services daily because people confuse her son's symptoms with neglect." A solicitor who represents parents in this situation of parent blaming said "I've lost count over the years of the number of parents that have been told it's their fault in some way or another, that they're not adequately parenting the child," Rewind to my friend Charlotte, at the start of this blog, upset at the parent blaming occurring in her own field of outdoor learning. She, I know has also been party to much parent blaming and she does her best to remain calm, ride it out and continue to support her son in the best way she can, despite suffering some pretty humiliating comments and suggestions about her parenting capabilities.
This is not a new phenomena, autism has historically, frequently been blamed on mothers; one notable example was autism itself being believed to be a direct result of mothers being cold, distant and not showing their children enough love, this coined the term "refrigerator mother". I too have been on the receiving end of some excruciating parent blaming. One of my daughters (now diagnosed with Aspegers Syndrome part of the autistic spectrum), was struggling in primary school for many reasons. She was super bright but I knew this wasn't evident in school as she was almost mute. I went into school to discuss her progress and ask what her day might be like in school time, as when she came home she was explosive and frustrated. As my daughter was quiet and well behaved in school, they actually blamed her lack of progress and the after school explosions directly on my parenting and suggested that there was no problem but that my own neuroses was making her anxious. To them, the out of school timing of the explosions were enough to disregard my concerns as a parent and my daughters difficulties in school and her lack of progress. Later I was told that following that meeting, the teacher had actually said, "I don't know what Nik is on about, she is so up herself, Jay (my 7 y/o daughter) isn't all that anyway". Trying to talk to the primary school about after school melt downs and academic underachievement basically resulted in heart breaking character assassination of myself and my daughter. This is why blaming parents (most often the mother) is a multiple injustice, it belittles the parent and disregards what the child's behaviours tell us about what they find difficult and what they need to thrive or just to cope. We now, in the autism community understand this build up of stress from a day at school/college/work, as the coke bottle effect, rather than being a result of incompetent parenting, the coke bottle effect requires near super human parenting powers!
The coke bottle effect
The coke bottle effect describes how each time an autistic child struggles in a situation where they are trying to conform to the social norms required by that situation, it is akin to shaking a bottle of coke. They may look as if they are fine but be using all of their energy to hold it together and each challenge in the day is another shake of the bottle. If there were challenges before even leaving home, that bottle is already shaken up before their day begins. Many children understand or are pressured into conforming to great distress and pain to themselves but will store this up until they feel it is safe to release, hence the coke bottle effect. As soon as the parent arrives or the child arrives home, in their safe place, the lid comes off and the coke bottle explodes. Some children of course can't always wait for the safe person or the safe place and this is when we may see melt downs in our outdoor work.
Depending on the individual, as discussed briefly already, the outdoor environment may provoke more challenges and shakes of the coke bottle, or less. Regardless of these specific outdoor challenges, the individual may have already had the coke bottle shaken before arriving at your setting, if they had to get out of bed before they were ready, or were asked to put on unusual outdoor clothes, or were given a breakfast that wasn't what they expected, or hadn't fully processed a difficult encounter or conversation from the day before, then their coke bottle could be shaken before they arrive. In this example, it is easy to understand that so much about ASD diffculties and behaviours are completely outside of what you do as the outdoor leader, however, there is so much that you can do to help.
Parents are your greatest ally and your outdoor ego your greatest enemy
Making positive relationships with parents of ASD children/young people is crucial, they know their child better than you, resist the urge to think you know better. Ask them for advice, what motivates, what triggers, etc. etc. A parent of an ASD child will smell judgement, like a wolf, from very far away! Do your utmost to not alienate your best resource and support for that child. Remember that they know and live with their child with ASD so they know how hard it can be and they will be so grateful for all that you offer and provide for them. Parents will know the patterns of their child's behaviour, or lack of pattern, and it is unlikely that they will blame you for any challenges or difficulties that their child has; they know more than anyone else that some days are fine and some days are not. If an ASD child has a melt down-it's not all about you and it's certainly not about parenting styles. If it's not already super clear, parent blaming is a disaster for everyone in this scenario.
There is a chance that some ASD children will surprise everyone and do something or taste something that people who know them best said they would never tolerate, resist the urge to feel you have some magic powers here. There is a possibility for some individuals living with ASD to do something unusual for them in a new situation. It can almost be as if they press a reset button in a new environment, and so being in the woods with you may mean that suddenly they eat a particular food or will get muddy when usually they would hate those things. One of the reasons for outdoor learning having so much success and potential to engage individuals with ASD is that it provides a brand new opportunity to try new things, a new environment or a new person, it can mean the chance to make new rules. I bring this up here, as this can also be a way that outdoor leaders can unintentionally undermine parents and parenting of ASD children and young people. Our outdoor egos can get in the way when we believe that we, nature, the woods, the beach, the climb, the water, the whatever, has had an amazing effect on a person or child, when in fact, as brilliant as all outdoor leaders are, for some ASD individuals, this may be more an effect of the reset function.
The problem with Neurotypicals!
Cynthia Kim on her blog site also states that there is research to suggest that ASD individuals actually do better at integrating with a group of neurotypical (NT or non ASD) people, than a NT person integrating with a group of ASD people. This is another important point to reflect on, ASD can be really difficult to understand and so don't give yourself a hard time but ASD people are much better at integration than is usually assumed . Experience has shown me that the best information comes straight from the source, talk to the parents and talk to the child or young person. Be wary of "experts". This is an area of understanding in outdoor practice that probably relies more on sharing, rather than expertise. Some of the worst experiences I have had on this came via "autism experts", be discerning and wherever possible, go straight to the source for advice or recommendations.
Some of the challenges that you encounter when working with ASD individuals outdoors, may not be about them but in fact the NT individuals who may struggle to understand and accept different ways of working or being. This is a continual challenge in my groups. Diversity is fantastic and always preferable in my opinion, but also throws up challenges in helping different groups to understand each other. It's not unusual for ASD kids to quickly become a target of ridicule or bullying by NT kids but then for the resulting incident to look as if it is the fault of the ASD kid as they can also be prone to explosive reactions. A watchful eye is needed as ASD children (and adults) can't always tell when they are being ridiculed and often interpret unkind behaviour as play and sought after inclusion. It's not unusual for ASD children and adults to call bullies, their friends. When the ASD child realises what is really happening, if they ever do, the fall out is nothing short of nuclear and this is another reason why NT children may target ASD children as the reaction that they get can be alarming. This job can feel like translating one language into another so that each culture can understand the other, so clearly you need to speak both languages the best that you can. Get up to date, do your research. Don't blame the child when you didn't do your homework!
Ear Time
Such a lot of energy can be spent on processing if you are diagnosed with ASD. One of my observations I'd like to share, of working with people with ASD, children and adults, is that they may need a surprising amount of "ear time", you may need to listen to them a lot, this may be in bursts or at times almost continually. This isn't the case for everyone obviously but it's not unusual for people with ASD to be considered quiet, shy or almost silent and so it's useful to know this profile doesn't always fit. Not being listened to adequately can also shake the coke bottle for some, which is challenging if you are managing fire, tools, kit, dangerous environments etc. My daughter is one of the people I know and work with who needs a lot of ear time. As a youth leader I asked her to work with a child who also needed a lot of ear time and she was equally fascinated and irritated by him. They were like chatty, knowledge magnets that could equally attract and repel. Their mutual need to offload random facts and knowledge made them a great and a terrible team simultaneously! It seems she processes all of the information she has taken on that day by talking about it. Sometimes she needs me to just listen and not reply, in fact replying would be fruitless and she would likely just talk over me anyway, and at other times, she needs to ask questions or test out ideas and then my input is required. This can be very tiring and difficult to juggle with other tasks and people you are working with. For some children they need a "buddy" that they can share their experiences with, this can be a processing necessity. There is no getting away from the fact that working with ASD individuals requires more staff resources and an attitude change of gear. Issues or explosions in outdoor settings may just be the result of a lack of available ears.
The tip of the iceberg
For starters, using the phrase "the tip of the iceberg" is problematic as many individuals with ASD struggle with metaphor and can take phrases like this literally or just not understand at all. In my outdoor practice, I have needed to be careful particularly around food and foraging, to be mindful of how I phrase sentences relating to eating. There have been some near misses with salt, mushrooms and six eggs still in their plastic box going into the water to cook, due to forgetting to be clear about my instructions. Some children/young people with ASD will take everything you say and deliver exactly what you asked and then you and they will wonder why there is a problem. The tip of the iceberg is that this blog could never cover everything, there is so much to know and understand. I know enough, to know I know very little and continually read and keep informed. Now go and look up ASD in girls, theory of mind, executive functioning, sensory overload, sensory diets, masking, sensory hangover, Michael James and Autism in Forest School, Tony Attwood, PDA and anything else that has been flagged up in this blog. The knowledge and understanding of ASD is changing and evolving all of the time and it must be our responsibility to keep up with it.
This blog is for my mate Charlotte, her sons, her parents and my daughter Jay and for the children and parents in my groups and every other parent, grandparent, child or person who has had to experience the judgement and misunderstanding of what living with ASD actually feels like.