Disclaimer: I am not Autistic. I am a parent to two Autistic children, for whom I attempt to advocate. All I know about the Autistic experience is gleaned from closely observing my children, from reading blogs and books by Autistic writers, and by talking to Autistic people. I am trying to find the best way through life for my children without discrediting who they are, but in the process I may get things wrong. If there is anything here that could be construed ableist, or misunderstands some facet of Autism, please let me know and I will amend. Thanks.
I went to an amazing talk the other week held at a local school about Pathological Demand Avoidance (PDA) and Education. It was fascinating, and I came away with lots of thoughts about how we approach education in our house. The main thing that hit me, though, was a tiny portion of the talk that mentioned autism and happiness. The speaker, Geoff Evans, said “Stop looking at where there are problems, look at where they are happy.”
Difficulties with mental health are highly prevalent among people with autism. A study by Sarah Cassidy of Coventry University found that up to 66% of adults diagnosed with Asperger’s Syndrome had contemplated suicide. 31% reported that they suffered from depression and 35% of them had planned to or attempted to take their own lives. The rate of people hospitalised after an attempt at suicide and who also have autism is between 7.5% and 15%, much higher than the 1% rate of diagnosis in the UK.
It is well known that Autistic children tend to have much higher anxiety levels, and this has an impact on their ability to function in a school environment. Exclusions are much more common among Autistic children, The Autism Education Trust (albeit in an old (2009) article) put this at 27% of Autistic children, with 23% being repeat exclusions. I regularly read on both home education and general SEN boards on Facebook about children who are struggling and unhappy in their lives. This seems to run so deep that simply mentioning that your child has autism often elicits a response along the lines of “oh, poor love”, even from other parents of Autistic children. A nurse, just yesterday, strongly implied that our lives must be so hard because of my children’s autism. Many express surprise when I say they are happy, and enjoying life, and so am I. This is not to suggest that other Autistic people are not having a hard time, but the way our lives are running we seem to have found a sweet place where we can all achieve happiness.
My research on this subject has raised such an emphasis on intervention and therapy, ways to change the way an Autistic person is, that it seems unsurprising to me that the mental health of Autistic people takes such a hit. In Chris Packham’s recent film ‘Asperger’s and Me‘, he visited a therapy centre and an education centre for children with autism in the USA, both of which used ABA-centred approaches to change Autistic children. A lead professional at one centre compared autism to cancer, and claimed that he could cure it with a form of “educational chemotherapy”. It is no wonder that Autistic people feel depressed if they must change the way they are, the way they think and react, in order to be accepted by society.
Many would argue that the interventions they choose for their children are intended to improve their children’s success and quality of life, and this can seem justifiable. However, all the measurements of how successful an intervention may be are by neurotypical societal values such as number and degree of autism symptoms, levels of cognitive functioning, and skills and behaviours especially social skills. Intervention, at best, is an indirect criticism of how the mind of an Autistic person works. At worst it is traumatic and abusive. Peter Vermeulen (PhD, Autisme Centraal, Belgium) points out that this leads to the “assumption that success in life and happiness are based on high levels of independence and adaptive functioning. That assumption should be challenged.”
What does happiness mean? I imagine that each person reading this will think of something different, we are all unique, after all. However, neurotypical societal values tend to suggest that happiness is achieved through feeling successful, with friends and (for adults at least) independence. What might happiness mean to an Autistic person? Of course, Autistic people would also all have a different answer. However, if we were to distill all these answers, and those of neurotypical people, down to their roots perhaps we would come to a feeling of being ‘secure and content’.
Max Sparrow is an Autistic author, artist, advocate and speaker who presented the keynote address at the Autism and the Pursuit of Happiness Conference in 2016. He points out that “Autism is filled with happiness… We are, like all humans, born to rejoice.” My thoughts at this line turn to my Teddy, and his infectious joy. He seems to feel all emotions to an extreme, but joy is one that bubbles from him almost constantly. Joy in running through the woods, joy in catching bubbles, joy in bouncing on the trampoline, joy in cleaning the windows, joy in marmite on toast, joy in pumpkins…
Sparrow makes the point that we cannot make someone else happy, happiness comes from within, but that there are certain ‘happiness thieves’ that Autistic people may need to protect themselves from. He mentions unwanted or inappropriate interference from others, loneliness (and discusses the difference between loneliness and choosing to be alone), being around people who do not understand or blame him. Most importantly, he makes clear that “our happiness is filled and drained in ways that can be subtly different”.
Those of us who wish to protect and encourage the happiness of Autistic people need to take care to respect this, and the knowledge that each person’s path to happiness is unique. Packham, in a recent article for the Telegraph, points out “We have to see this breadth of neurological difference as extremely advantageous to our species.” We need to accept autism and Autistic people as a vital part of our society with their own skills and voices, not as a group who need to learn to conform to neurotypical ways.
Perhaps this is why my Autistic children are happy, without the need for interventions or therapy: they are accepted as they are, two unique individuals. As Geoff Evans at the PDA talk the other week suggested, their Dad and I have looked at where they are happy, and built upon that.
“Happiness is not a specific lifestyle, it is the ability to make decisions for yourself and be treated with respect and dignity, as a person who is capable of knowing what they want from life. Happiness is the freedom to choose and the support to make those choices into reality.” – Max Sparrow