by Erika O'Brien
Over the years, as I have sought to raise my autistic child to live as an adult in this world, I cannot recall any professional advising me to make the enhancement of his happiness the focus, before all other interventions. Speech therapy, play therapy, occupational therapy, sensory integration therapy, social skills courses - these were key, or so I believed. I assumed that a degree of ‘happiness’ would come once these other therapies had done their work.
It was a surprise when, at the recent Asia Pacific Autism Conference in Sydney (APAC 17), Dr Peter Vermeulen from Autisme Centraal in Belgium, suggested that we should start with addressing the ‘happiness’ of autistic children/people, and that, only then, would we see a decrease in the autistic symptoms which impact their functioning in unhelpful ways. ‘Happiness’? I wondered what that even meant for autistic people - or indeed, for me.
In defining happiness, Dr Vermeulen first considers human needs, and he rightly points out that as humans, we share the same basic needs, regardless of whether or not we are autistic. While we must respect the differences between people with Autism and people without it, he says it is not the differences, but the similarities, which require our attention when considering interventions.
Things like fulfilment, spirituality, positive self-esteem, belonging, safety and security, and physiological needs are shared factors which help create emotional well-being for us all. These are linked to the idea of happiness, which Dr Vermeulen defines in terms of living a life which is both ‘Pleasant’ and ‘Meaningful’. A ‘pleasant’ life would involve such things as a good measure of positive feelings, absence of too much pain, safety, and the ability to do activities that you like. These are complemented with things that make a ‘meaningful life’ which incorporate a sense of contentment and purpose and the type of satisfaction that comes from serving other people - the idea of ‘making others happy to be happy’.
Having understood and agreed mostly with Dr Vermeulen’s concept of ‘happiness’, I still wondered why it should be given priority above other interventions as I raised my autistic son. But it is simple really. The fact is that, generally speaking, people with autism have more negative feelings than positive feelings. They tend to experience more stress and to be more vulnerable to negative life events. These negative feelings can result in a person’s autistic symptoms increasing. Most parents of children on the spectrum are acutely aware of the link between unhappy, negative feelings and their child becoming rigid and inflexible - and focussing themselves on irrelevant details. So the symptoms increase with the unhappy feelings.
Conversely, many parents of children with ASD would also say that their child can actually lose their symptoms of autism at times. They appear autistic one day, but neurotypical the next - or they can alternate between being autistic and non-autistic throughout a day. This loss of symptoms, according to Dr Vermeulen - has to do with an individual feeling a sense of emotional well-being and happiness, which may stem from things like being in a familiar environment, feelings of safety and security, low stress levels, and so on. Positive emotions lead to individuals on the spectrum becoming more flexible and adaptable, and to increased cognitive functioning. Put simply, if we can help them feel better, their symptoms will decrease.
I can recall that many of the therapies I tried with my son were jeopardised by his changing moods. There were times when he was grumpy, uninterested, lethargic and unwilling to engage with me or the therapists. It didn’t help that I was also stretched emotionally with the busyness of attending therapy sessions, and by the difficulties of managing my son’s emotions. Perhaps focussing more on how I could trigger his feelings of happiness (and my own!) would have helped him to be more receptive to therapy - or perhaps it would have meant that he needed less therapy to begin with.
Dr Vermeulen pointed out that only about 0.2% of interventions for autism look at the emotional well-being of children. Yet it is well established fact that many people with ASD struggle with depression and overwhelming negative feelings. More attention to the happiness of those on the spectrum is clearly warranted. According to Dr Vermeulen, “the first and most important step is to develop autism-friendly ways of assessing positive feelings (for individuals with ASD).” Given that those with ASD can have difficulty reflecting on their own feelings and beliefs, it is a challenge to fully understand what triggers feelings of happiness in an individual. Suitable ‘autism friendly’ questionnaires will be developed in the future. In the meantime, how can we facilitate feelings of happiness in our autistic children as we raise them?
While Dr Vermeulen’s broad brush strokes of ‘needs’ and ‘happiness’ for both neurotypicals and those with ASD were detailed earlier, the specifics of what makes an individual feel happy will, of course, differ. For instance, while both neurotypicals and those with ASD experience increased happiness while doing activities that they enjoy, the actual activities they like may differ - this is where the detective work of parents and carers begins. We need to explore things that trigger happiness in our autistic children - beyond the obvious activities such as computer games and eating lollies!
DR VERMEULEN’ S TIPS FOR FACILITATING FEELINGS OF HAPPINESS
Look at when and where the person has a decrease in autistic symptoms. Look at when they are comfortable. This will help you identify what triggers their happiness.
Avoid forcing a person with ASD into stereotypical ideas about autism. For instance, don’t assume a person will not want to go to a rock concert because of sensory overload issues. Autism friendly social and cultural events may be great for some, but not for others.
Find and access their sensory preferences, rather than focussing on sensory difficulties
Don’t romanticise autism. A child’s happiness may not be enhanced if he/she has the pressure to become like Einstein or Bill Gates!
“Avoid forcing autistic people into a neurotypical concept of happiness: happiness is a personal and subjective construct and the things that make an autistic person happy do not necessarily mirror those that make a neurotypical person happy.” For instance, an autistic child in the playground may be happier watching other children play than he would be if he was forced to join in with the other children.
Don’t take away difficulties and challenges - help them to face the challenges but give them the right amount of control and predictability.
Physical activity is absolutely essential. Sure, ‘mindfulness’ is great, but before that, try getting outside and moving the body.
A job is important as a means for one to contribute and make others happy. Every autistic person, be they low functioning or high functioning, can contribute to society and their contribution can be one of their main sources of well-being. And, as a bonus, think of the social skills that could be learnt, naturally on the job, if the person is feeling happy to have the role.
Have HIGH EXPECTATIONS but give HIGH SUPPORT
I hope you have been challenged as I have been, to help facilitate happiness for my child and to prepare him for life, whatever that may look like for him. I have been convinced that better outcomes for my child will result - not from being overly focussed on therapies to 'fix' the negatives - but from thinking creatively about how to trigger his feelings of happiness and sense of well being.