Recently, A few people in my life and a few people who follow my Cat on a Trampoline Facebook page have asked me what my opinion is on some of the key debates relating to Autism. I thought I’d share them with you all, because they are bound to come up at some point in the things I write about and discuss. I just thought it would be useful for you to know. I’m not saying that anyone who has a different opinion to me is wrong, I am not judging anyone, I am simply using this forum to explain how I have reached my ideas and opinions.
This approach to understanding Autism feels right to me. The Neurodiversity explanation of Autism says that the neurological differences from which Autism originates are a result of a natural variance in genetic makeup within the human population. Some people are white, some are female, some are gay, some have red hair, some are Autistic.
To me, this makes perfect sense, and it is the single most important concept that has helped me on my road to acceptance and understanding following Melon’s diagnosis. I’m fully aware that many autistic people and their families face tremendous difficulties every single day as a result of having autism in their lives, and that some of them will need significant support for the rest of their lives. But I don’t see/think about Autism in Terms of it being an illness or disease. Support and intervention for Autistic people in order to to facilitate their safety, development and independence is not the same as a cure.
“Person first” Language
I recently had an experience on my personal facebook account where a friend of a friend stated that I could not claim to advocate for Melon whilst I continued to refer to her as an “autistic child” rather than “a child with autism”. she felt that I was labelling Melon, presenting her to the world disability-first, instead of child-first, and that this will perpetuate the image of autism as a disability. I had never had any negative comments about his before, and it made me reflect.
I feel that by referring to Autism as something that Melon “has”, as though it is a cold, a tumour or an injury, it feels as though I am seperating it from her, placing it to the side like something undesirable, unwanted. Autism is far from being all that my little girl is. She is a wonderful, curious, gentle, affectionate litle person with a range of interests and skills, who learns and develops every day. Yet Autism is intrinsically interwoven through every experience she has, every life lesson that she learns, through every interaction that she navigates, it is part of her just the same as her gender, her eye colour, her stature. And it originates from her genetic make up, just the same as these other characeristics do. She is my blond child, my female child, my autistic child.
When she is older, and if/when she is able to have the conversation, I will ask Melon how she would like to be referred to. And I will go with that. Until then, I am guided by my gut instinct, and from the feedback I have recieved from various Autistic adults that I have spoken to.
Genetic research –
I personally don’t see how finding an “autism gene” is in any way going to affect us, or Melon. All the research that I’ve read suggests that multiple genes and chromosomal regions may play a part in causing the neurological differences that lead to autism, so the identification of a single “autism gene” looks unlikely. A person’s genetic make up is expressed in every single cell of their body, every single little part of what makes them “them”. Even if you could re-write someone’s genetic code, you would not be left with the same person at the end of the process.
I just feel like the millions of pounds/dollars that are spent on genetic research could be better used to fund things like work and employment programs, training, paid advocates, more respite and residential placements, communication and speech/language research and interventions.
In utero testing for autism –
Such tests aren’t available yet, but may be possible in the future if the geneticists do manage to identify their “autism gene”. We didn’t take the Down’s syndrome test in either of my pregnancies, and we wouldn’t have had an autism test even if it was available. Autism, like Down’s, is a spectrum condition. There’s no way to tell from the test results in what area and to what degree a person’s functioning will be affected by the presence of the “autism gene”, no way of identifying what their needs will be, so I personally wouldn’t feel able to use the test results to “prepare” for an autistic baby.
The “epidemic” of Autism
Diagnosis rates for autism are on the rise. I don’t think that this is due primarily to pathogens in the air, or toxic food; rather that those things may make the difficulties caused by autism in some people more severe. I feel that the rise in diagnosis is due to better awareness of what autism is, how it presents, more testing and more sophisticated administering/interpretation of test results. I have seen no evidence that there has been a sudden increase in rates of those with severe, non-verbal and classic autism. From what I have read thus far, the major growth area of autism is in those at the higher functioning end of the spectrum: it is those children and adults who tend to have good verbal skills, no learning difficulty, good levels of daily functioning, fewer problematic behaviours, who hold down jobs and maintain friendships; they are the people who in the past would not have been presented for autism screening. They are the people who are now presenting, being screened and diagnosed and are contributing to the swell of new diagnoses. I don’t see a problem in that. If diagnosis helps those people to better understand how they experience the world, to enable them to live life more easily, to accept themselves and to achieve even more, then that is my kind of epidemic.
These are just my opinions, as I have formed them through my readings, experiences and research over the last few months. I have thought about them a lot. I don’t expect everyone to agree with them, and I don’t reject people who have different opinions to me. You have reached your opinions as a result of your own journeys in the same way that I have and I respect that. I welcome discussion, I believe in openness.
We are all part of this Autism community.
We are stronger together, we are weaker when we allow differences in opinion to divide us.
We must respect each other.
The most important thing is that we promote awareness, understanding and acceptance for Autism amongst those outside our Autism community.
Thanks for your time.