The controversy surrounding a ‘cure’ for autism
Jen Blacow and Elizabeth Guest
24th September 2021
Some people on Twitter are OUTRAGED at a recently published autism study, which reports that improving the way parents interact with their babies reduces the risk of an autism diagnosis by age 3.
The study looked at children who showed 3 of 5 early signs of autism based on how they interacted with their parents. The children were split into two group. One group received the standard level of intervention they would normally receive after being identified as having early autistic traits. The other group (and their caregivers) received the prescribed course of therapy.
Reactions to these types of studies from the neurodiversity movement are not a new thing. There has been long-standing rage from some individuals who identify as autistic against clinicians seeking to find answers when it comes to autism.
To be fair, it is understandable that many autistic people are sceptical or even vehemently against some of the authorities in the autism arena, due to there being historical discrimination, misunderstanding, and downright fraud against autistic people and their families.
Many autistic people have experienced trauma due to being subjected to inappropriate interventions, their experiences have been invalidated, and they have effectively been told, in a roundabout way, that their existence is unwanted.
Some people believe that any attempt at improving the lives of autistic people which involves them having to adapt their behaviour in any way; and which doesn’t involve society accommodating all of the various autistic difficulties (impossible), and feeling guilty and shamed for being ‘neurotypical’, should be banned.
But there are so many other things wrong with this level of vitriol that has been targeted at the publication of this study.
Many don’t appear to understand what they are reading. I’m not sure if they even have read what they are so readily and heavily criticising.
If they looked at the study carefully and logically (which is what my science-minded autistic colleague did), they would find that what they are all getting so upset about is not about a ‘cure’ for autism:
- The children in the study were not diagnosed with autism. They just had early signs that might result in a future diagnosis.
- The children were followed up only until age 3 and only a comparatively small proportion of the total number of children received a diagnosis at that point. It maybe that others would receive a future diagnosis.
- Nobody knows whether the children in the study who were not subsequently diagnosed by age 3 were actually autistic. These groups of children were recruited on the basis that they were identified as having some autistic traits! That does not necessarily mean they are all autistic.
- Helping parents interact with their children, in general, is likely to be beneficial for development
- The invention was focused on the parents, not the child. It was focused on modifying the parents’ behaviour not the child's behaviour. (Which is precisely what neurodiversity activists say they want!)
If the study is read in detail, it suggests some important findings.
The study found statistically significant differences between the two groups of children (the intervention group and the control group) involved in the study with respect to the following aspects of the DSM 5 (autism diagnostic) criteria:
- Deficits in social emotional reciprocity
- Stereotyped or repetitive motor movements, use of objects or speech
- Sensory issues.
That means the following were not statistically significant between the two groups of children
- Deficits in nonverbal communication used for social interaction
- Deficits in developing, maintaining, and understanding relationships
- Insistence on sameness
- Highly restricted fixated interests that are abnormal in intensity or focus
The intervention seems to have had a significant impact on reducing the child’s deficits in social emotional reciprocity and/or sensory issues. However, it does not affect some autistic difficulties.
This makes sense because
- It is not just autism that causes children to have difficulties with social emotional reciprocity. The intervention will have help children with difficulties other than autism that lead to difficulties with social interaction.
- It has been found that sensory processing disorder interventions work best when the child is very young. Also, the Son-Rise programme targets sensory issues and interactions between parent and child.
- Stereotyped or repetitive motor movement and use of objects or speech, are linked to sensory issues. So logically, improving sensory issues will improve these issues too (as found in the study).
It has nothing to do with making children appear less autistic
So despite the claims of the angry people on Twitter, this is nothing to do with making children appear less autistic!
Aspiedent CIC has been researching and trying to get to the bottom of autism for a long time now and has found that there are some core underlying difficulties in people with autism, which are not emphasised in the diagnostic criteria. Interestingly, it looks like these underlying issues are not affected as a result of the study's intervention.
These are difficulties processing information, idiosyncratic ways of thinking, and focus and interests.
This leads to our conclusion that the intervention technique used in this study weeds out both those who would be misdiagnosed with autism because of difficulties with social interaction for reasons other than autism and those who have sensory processing disorder and not autism.
It can be difficult to tell the difference between autism and sensory processing disorder. Although research demonstrates sensory issues in autism are not the same as sensory issues in sensory processing disorder, the differences are subtle.
So what are all the people who state they are autistic on Twitter worried about? Isn’t helping children a good thing?!
What this study really sheds light on, and what everybody seems to agree on, is that seeking or getting an Autism diagnosis as a way to get support is really not helpful. It is better to get support for the difficulties you do have rather than the difficulties you don’t have.
It would be interesting to see if all the interventions for autism that claim to 'cure' autism, actually turn out to cure a different underlying disorder that has been misdiagnosed as autism, and actually have little effect on what is understood to be autism.
But then we are back to the question 'what is autism?' to which there is currently no really satisfactory answer.