My volunteering journey involves spending time with people with special needs, and all of them have very different kinds of needs, as they are individuals. And since I started volunteering five months ago, I have become more and more familiar with Autism Spectrum Disorder. However, the more I spend time with them the more I see I am still at the very beginning of this path! Yet it is intriguing, I keep asking questions to people who have been living/working here for many many years now, about the residents we live together (people with special needs) in this community. I got many precious answers, yet I believed I also needed an “insider”.
Communication difficulties have a big place in the spectrum, so I couldn’t go and ask them about it.
An inside-out Approach
I needed an insider. But most people with autism spectrum disorder are not always vocal about their needs or how they feel.
Yet some of them do.
That is why it is called a ‘spectrum’.
I found this book in the library which made me very excited:
Autism: An inside-out Approach by Donna Williams
An author who was diagnosed with autism, writing about autism. Many readers questioned whether or not she was really autistic. After many years of doubt, now her books are seen as an offer to have a deeper understanding of autism.
Alright but… what is autism?
According to Donna, her own autism is ‘one bucket with jigsaws in it, all jumbled together and all missing a few pieces each but with a few extra pieces that didn’t belong to any of these jigsaws’ (1)
It is a big dilemma, isn’t it? Dealing with all the pieces of many jigsaws.
Donna explained her autism a quarter-century ago. And now when I search for 'autism' on google images I see puzzles with missing pieces. It seems like her definition of autism has influenced other people's image of 'autism'
And let’s see a more formal or common definition of autism:
‘Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication.’ (2)
Tackling the Bogie-Man of ‘Autism’
People opinionatedly have different views on autism for different reasons, she explains:
-it is not ‘normal’
-it is a burden that they should assist
-because they don’t have the energy to ‘cope’ with someone’s autism
-beyond the autism, there is some sort of ‘normal child’
-that person is not more than ‘a bag of autism’ (3)
She adds autism is more than a label, more than a collection of symptoms or causes to deal with.
It is the Bogie-Man of Autism that needs to be dealt with, not the people who have autism.
Problems of Control
Problems of Tolerance
Problems of Connection
-‘systems integration problems’
-‘left-right hemisphere-integration problems’ (4)
Donna was married to Chris Sammuel until she died of cancer in 2017. Her husband, Chris had ‘Asperger Syndrome’ which always seems to have a more ‘capable’ place in the autism spectrum.
Donna explains their relationship in terms of both are being on the same spectrum:
‘…Paul, like me, has candida Albicans which is a yeast that he and I have probably had since childhood. Both of us have problems relating to toxicity, food and chemical allergies, vitamin-mineral deficiencies, and reactive hypoglycemia, all of which affect the supply of oxygen and other nutrients to our brains.’ (5)
When I first read this passage, I was quite surprised to learn the effect of yeast so I started to do some research on the topic:
The source of dysbiosis and Candida overgrowth in ASD is currently unknown but may be influenced by the immune dysfunction seen in many children with ASD. Alternatively, this overgrowth may be contributing to immune and GI dysfunction and the behaviours are seen in ASD. (6)
Even though there is no scientific evidence about the correlation between ASD and Candida albicans, kids with ASD are more likely to have yeast than the other kids:
‘…results from this 2018 study show that anti-Candida albicans antibodies were found in 36.5% of children with ASD versus only 14.3% in neurotypical kids.’ (7)
‘Paul and I also both share attention problems… Attention Deficit Disorder, we also both have a visual-perceptual condition called Scotopic Sensitivity Syndrome (a bit like dyslexia) which affects how we are able to process visual information and we have the same problem on other sensory channels.’
‘Of the two of us, my processing of incoming information is generally less efficient. I am the more literal of the two. I generally struggle to achieve complete literal interpretation of information and generally have little processing capacity left over for things like relative or personal significance…
Paul on the other hand, like many people with Asperger syndrome, processes relevant and irrelevant information alike but, like many others like him, his processing is more efficient, and he processes the information beyond the literal level.’
It is quite interesting and sounds accurate how she had the chance to see and understand their position on the spectrum. Thanks to her courage, people are still reading her books to understand autism.
Donna doesn’t only enlighten us about autism, but she also illuminates our inner worlds and shows us how we are limited to see ‘differences’ and accept them. Her imagination, and the metaphors she used to explain her experiences in-depth, will help people understand.
Lastly, I would like to leave her website here.
1-2-4-5)Williams, Donna (1996). Autism an Inside-Out Approach, page: 7 ; 18 ; 24 ; 272 ;