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Is the Idea of the Autism Spectrum Completely Wrong?

ArchaeC


New Scientist Magazine’s lead article considers if the idea of autism as a spectrum is completely wrong.

Team member and geneticist Olga Troyanskaya at Princetown University and the Flatiron Institute states, “the researchers were surprised by how strongly the four groups came out of the data. "Every individual is unique, but there do seem to be these replicable groups."

New Scientist discusses the study by Geneticist Natalie Sauerwald and her colleagues at the Flatiron Institute in New York. “They used a dataset from Simons Powering Autism Research, a research study that is led by the autistic community, which included 5392 autistic people—an order of magnitude more than previous studies”. They too found patterns in the combinations of traits that fell into four subgroups. It is unclear how these two studies and other subtype studies fit together.

In the article, Anoushka Pattenden of the National Autistic Society has concerns, "We fear that further categorising of autism is unhelpful and may lead to more stigma or discrimination,"

New Scientist science writer Michael Marshall considers “The idea of an autism spectrum, where autistic people have similar traits only to a greater or lesser extent […] is challenged by studies that find that autism may come in multiple distinct forms. These subtypes have more in common with the colour wheel picture of autism […], which plots the extent to which an autistic person experiences each trait as you move around the spokes of the wheel”. 

”The researchers hope that a respectful approach to subtyping can reveal autism's underlying biology in a way that also brings this colour wheel, and the lived experiences it contains, into focus”.

The full article (pay to subscribe) is at the link, but New Scientist and other magazines and books are available to read free of charge through public libraries. You need to become a member first and then download the Libby app to read.

https://www.newscientist.com/article/2509117-what-if-the-idea-of-the-autism-spectrum-is-completely-wrong/

I’m content to take a ‘wait and see’ approach to what future research might reveal. I believe there are potential benefits to moving to four subtypes, but I have concerns that some people might end up not in any category and that it could end up stigmatising some groups more than others. As it is, the spectrum model of autism does not reflect what it is to be autistic and I don’t consider myself ‘disordered’ (Perhaps it would be more accurate to suggest that the thinking that lead to such a label was disordered?). I’m glad that the value of the autism colour wheel model is recognised by scientific researchers and New Scientist Magazine. Perhaps that is a big step towards encouraging psychiatrists to evaluate their terminology when talking about and to autistic people.

Any thoughts?

Parents

  • The current evidence suggests that there are two main genetic causes of autism - inherited genetic variants of small-scale DNA changes (mostly single nucleotide polymorphisms) and de novo larger-scale changes in DNA (deletions, duplications and transpositions) which tend to produce more severe problems and are less common. Individuals can have a mixture of both, but this is relatively rare.

    Can two causes produce the same condition? Or do two causes imply two conditions with overlapping features?

    I think that this differing etiology also has profound social implications. De novo mutations affect 'low risk families' disproportionately highly, so families with no history of autism traits suddenly produce an autistic child, and one who is more  likely to have a very deleterious presentation. This is where most of the 'autism mom syndrome' originates. 

    In contrast, if 'high risk families', with a history of people with autism or people with autistic traits, produce an autistic child the child is less likely to be very debilitated by their autism and the family are more likely to be able to cope with the child's needs and differences. Or at least cope without the parents taking on the mantle of 'burning martyr'.

  • in reply to Martin

    Great, succinct comment summarising the genetics of the situation. 

    I think this may be a controversial comment I’m about to make….  I apologise for any offence it causes to anyone.

    Martin, when you say “social implications” it makes me think of the attunement and caregiver attitudes that the two differing “genetic types” of autistic children receive.

    I sometimes wonder if the “high risk families” raise children who are “less debilitated” by autism, in part because of the child’s genetics (as in your first paragraph) but also in part because families full of autistic people will intuitively know how to accept and parent autistic children. Maybe they are less likely to pathologise their autistic traits. Their traits might not match the society at large, but they do match the vibe of the family. So nature plus nurture or “autism plus environment” leads to (on average) less severe problems because the developmental environment is more favourable. 

    Whereas the children born to “low risk families”, who don’t intuitively understand much of what it’s like to be autistic and where the autistic child may be seen as “different” to the family, are perhaps more likely to receive the implicit message that they are “hard to parent” or a “burden”. The child may receive less attuned responses from parents who (through no fault of their own) just can’t imagine what it’s like for their child. So nature plus nurture combined on average leads to more “severe problems”.

    To be clear, I’m not saying this is always the case. I’m sure there are “de novo children” born to wonderful non-autistic parents who go out of their way to help their children with a sense of belonging… and conversely “inherited gene children” whose parents are unable to nurture and accept their children’s autistic traits and sense of belonging in the world (even if they share or naturally understand some of those traits). 

    I’m aware I write from a position of privilege. I feel I benefitted by being parented by other autistic people and having only autistic siblings. If I was odd at school at least I did not feel odd at home. Whereas, when I watch some non-autistic parents struggle with their autistic children I feel uncomfortable about implicit messages the child may be receiving about whether they belong and whether they are basically ok. 

    Someone please tell me if this comment is somehow inappropriate for this forum, I’m still a bit unsure of what goes and what doesn’t here….

Reply
  • in reply to Martin

    Great, succinct comment summarising the genetics of the situation. 

    I think this may be a controversial comment I’m about to make….  I apologise for any offence it causes to anyone.

    Martin, when you say “social implications” it makes me think of the attunement and caregiver attitudes that the two differing “genetic types” of autistic children receive.

    I sometimes wonder if the “high risk families” raise children who are “less debilitated” by autism, in part because of the child’s genetics (as in your first paragraph) but also in part because families full of autistic people will intuitively know how to accept and parent autistic children. Maybe they are less likely to pathologise their autistic traits. Their traits might not match the society at large, but they do match the vibe of the family. So nature plus nurture or “autism plus environment” leads to (on average) less severe problems because the developmental environment is more favourable. 

    Whereas the children born to “low risk families”, who don’t intuitively understand much of what it’s like to be autistic and where the autistic child may be seen as “different” to the family, are perhaps more likely to receive the implicit message that they are “hard to parent” or a “burden”. The child may receive less attuned responses from parents who (through no fault of their own) just can’t imagine what it’s like for their child. So nature plus nurture combined on average leads to more “severe problems”.

    To be clear, I’m not saying this is always the case. I’m sure there are “de novo children” born to wonderful non-autistic parents who go out of their way to help their children with a sense of belonging… and conversely “inherited gene children” whose parents are unable to nurture and accept their children’s autistic traits and sense of belonging in the world (even if they share or naturally understand some of those traits). 

    I’m aware I write from a position of privilege. I feel I benefitted by being parented by other autistic people and having only autistic siblings. If I was odd at school at least I did not feel odd at home. Whereas, when I watch some non-autistic parents struggle with their autistic children I feel uncomfortable about implicit messages the child may be receiving about whether they belong and whether they are basically ok. 

    Someone please tell me if this comment is somehow inappropriate for this forum, I’m still a bit unsure of what goes and what doesn’t here….

Children
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