Content warning: functioning labels, pathology paradigm, feeding/gagging, injections, ABA language
Beyond The Spectrum screenings were held in theatres across Canada for World Autism Awareness Day, and I was invited to be on the discussion panel that was to be held at the end of the screening. In our case here in Montreal, no one showed up to watch, so it was just me and three other of my autistic friends.
I'd love to say I really enjoyed this documentary and had a great time, but I didn't. But let me back up.
Beyond The Spectrum follows a Canadian family for a year after their two year old son, Oskar, receives his autism diagnosis. His parents decide to take a year off work to devote to his care and explore many different methods, therapies, diets, and supplement "cures" to try to make him less autistic - I guess this is the best way to put it. They don't explicitly say that, but the father "hates autism" so this is the best paraphrasing I can come up with.
It should be noted there's an older son, Teddy, who is also autistic. The mother appears to have been a single mother at the time Teddy was diagnosed, so the therapies she did with him were different. Teddy appears to be around 8 or 9 years old in the film (I do not remember his age) and says he believes he is no longer autistic. He speaks of having autism in the past tense.
Regardless of the functioning language used in the film (Oskar is "severe"), My Little Man (now 8) presented very similarly to Oskar at the same age and now presents very similar to Teddy. Only difference is we did not subject our son to even half the therapies this other family tried.
The PR people who reached out to me to sit on the panel warned me ahead of time that the content of the documentary could be difficult or controversial. I was told I did not have to agree to everything I saw in the film, just provide my opinion/perspective. I believe their warning was warranted and I also think it contributed to the lack of an audience showing up to see it.
After the screening, I posted on Instagram and the father asked me if I related to it. I had to tell him, sadly no. As an autistic person, I could relate to the children and why they were behaving the way they did. As a parent, I was deeply disturbed - I found parts of it extremely difficult to watch and am glad I had my friend next to me to comfort me. Images of Teddy undergoing "feeding therapy" and gagging are still burned in my memory. Oskar being injected in his buttocks with vitamin B12 just make me sad.
On the plus side, I am glad I saw it because it represents what I believe so many Canadian families go through. We are still such an ignorant and ableist society that we don't leave room for difference. Because of this, parents are absolutely terrified by autism. They don't understand autism and have never spoken to another autistic adult. They see no hope.
Because I am so well-surrounded for the most part by people who accept difference, I forget there are still those parents who are parenting out of fear and ignorance. But this is reality and they are in the majority.
Unfortunately, autism has become an industry based on fear. People charge thousands of dollars to apparently "make children indistinguishable from their peers" and parents fall for it because they're terrified of who their child will become.
It makes me sad for them because they are stressing themselves out, they are stressing their marriages, they are stressing their children, and they are emptying their bank accounts - all because of their misunderstanding of autism.
At the end of the year, the father decides to go back to work, and the mother seems to be more accepting of Oskar.
I don't know what this family will do in the future, but I hope they find a way to be accepting and happy. It makes me want to work even harder to destroy the myths and fear, and create a society that is truly inclusive so that this family's story doesn't have to be the norm anymore.
Beyond The Spectrum screenings were held in theatres across Canada for World Autism Awareness Day, and I was invited to be on the discussion panel that was to be held at the end of the screening. In our case here in Montreal, no one showed up to watch, so it was just me and three other of my autistic friends.
I'd love to say I really enjoyed this documentary and had a great time, but I didn't. But let me back up.
Beyond The Spectrum follows a Canadian family for a year after their two year old son, Oskar, receives his autism diagnosis. His parents decide to take a year off work to devote to his care and explore many different methods, therapies, diets, and supplement "cures" to try to make him less autistic - I guess this is the best way to put it. They don't explicitly say that, but the father "hates autism" so this is the best paraphrasing I can come up with.
It should be noted there's an older son, Teddy, who is also autistic. The mother appears to have been a single mother at the time Teddy was diagnosed, so the therapies she did with him were different. Teddy appears to be around 8 or 9 years old in the film (I do not remember his age) and says he believes he is no longer autistic. He speaks of having autism in the past tense.
Regardless of the functioning language used in the film (Oskar is "severe"), My Little Man (now 8) presented very similarly to Oskar at the same age and now presents very similar to Teddy. Only difference is we did not subject our son to even half the therapies this other family tried.
The PR people who reached out to me to sit on the panel warned me ahead of time that the content of the documentary could be difficult or controversial. I was told I did not have to agree to everything I saw in the film, just provide my opinion/perspective. I believe their warning was warranted and I also think it contributed to the lack of an audience showing up to see it.
After the screening, I posted on Instagram and the father asked me if I related to it. I had to tell him, sadly no. As an autistic person, I could relate to the children and why they were behaving the way they did. As a parent, I was deeply disturbed - I found parts of it extremely difficult to watch and am glad I had my friend next to me to comfort me. Images of Teddy undergoing "feeding therapy" and gagging are still burned in my memory. Oskar being injected in his buttocks with vitamin B12 just make me sad.
On the plus side, I am glad I saw it because it represents what I believe so many Canadian families go through. We are still such an ignorant and ableist society that we don't leave room for difference. Because of this, parents are absolutely terrified by autism. They don't understand autism and have never spoken to another autistic adult. They see no hope.
Because I am so well-surrounded for the most part by people who accept difference, I forget there are still those parents who are parenting out of fear and ignorance. But this is reality and they are in the majority.
Unfortunately, autism has become an industry based on fear. People charge thousands of dollars to apparently "make children indistinguishable from their peers" and parents fall for it because they're terrified of who their child will become.
It makes me sad for them because they are stressing themselves out, they are stressing their marriages, they are stressing their children, and they are emptying their bank accounts - all because of their misunderstanding of autism.
At the end of the year, the father decides to go back to work, and the mother seems to be more accepting of Oskar.
I don't know what this family will do in the future, but I hope they find a way to be accepting and happy. It makes me want to work even harder to destroy the myths and fear, and create a society that is truly inclusive so that this family's story doesn't have to be the norm anymore.
