The Autism Schism: On causes, cures, and a divided community

April is “autism awareness month”, or better still, “autism acceptance month”, so today is my last opportunity to post a contribution. I do have an idea I want to express but no plan of how to express it, so I’m going to wing it.

This is going to be more of an essay than a blog post. Basically, I intend to touch on the causes of autism, the reason there is no cure, and the schism between the parents of severely autistic children and the autistic adults advocating for neurodiversity – all in one very long post because in my view, they are all connected. (I’ll try not to ramble too much!)

This is all my own opinion. It’s based on a lot of reading on the topic – but I’m not going to provide references; this is not a scientific paper! You are free to disagree.

What is Autism, really?

Well, it’s complicated.

The first thing to understand is that autism is not a disease but a developmental difference. Unlike contagious diseases, there is no single cause and it is present from birth.

Everyone gets the concept of congenital differences such as a club foot or hare lip. But autism is more complicated still. While autism is often referred to as a neurological difference, that can be misleading, as it’s not a single neurological disorder either. Autism is actually a set of common behavioural issues, related to differences in brain development, which occur as a consequence of a neurological problem.

There are actually a variety of problems which can occur in the way neurons communicate with each other. It could be that developing neurons grow too fast or too densely in various brain regions, are affected by changes in the supporting environment (glial cells) or by neurochemical imbalances affecting the synapses. The brain tries to compensate for these various neurological problems by developing in a way that is different from the usual. This developmental difference can later be recognised (through observation of a person’s behavioural challenges) as coming under the umbrella of the autism spectrum.

To summarise: autism is not a single neurological disorder, but a common developmental trajectory of a brain and nervous system which functions differently from the usual. Or:

Various neurological problems –> developmental differences –> common pattern of behavioural issues = autism

This concept is crucial to understanding the rest of this post, as you will see.

Autism Causes

Firstly, when we are talking about what causes autism, we are really referring to the causes of the underlying neurological problem(s). Immediately it is clear that there could be many problems with many causes.

Through studies of twins and families, scientists have identified that genetics factor strongly but environment also plays a role. Again, it’s complicated. Let’s break it down:

  1. Sometimes autism occurs spontaneously in a family with no history, through “denovo” (new) gene mutations.
  2. The environment of previous generations plays a role, as toxin exposures in the father could lead to damaged sperm, and toxin exposures in the maternal grandmother while pregnant could lead to damaged ova in the mother. A link has been established, for example, between autism risk and paternal age – as an older father is more likely to carry mutations in his sperm.
  3. Sometimes a faulty gene or chromosomal abnormalities are already present in parents and directly inherited. This may be the case for certain disorders such as Rett Syndrome and Fragile X Syndrome.
  4. In many cases, no single faulty gene can be identified, instead it is the combination of multiple genes that results in high “polygenic risk”. Between a hundred and a thousand genes are suspected to have links with autism. Fun fact: many of the genes linked to high intelligence also contribute to autism polygenic risk – hence why Asperger’s is known as the Engineer’s disease. (Perhaps this is indicative of a neurology that is stretched to its physio-chemical limits, and more easily tipped over to a malfunctioning state?)
  5. Even with a high polygenic risk, environmental factors will affect gene expression (by epigenetics), which means that autism may not develop, or may develop to varying degrees of severity. For instance, it is known that maternal toxin exposure (such as heavy metals and pesticides) or taking certain medications during pregnancy increases autism risk for the baby. Premature birth is definitely linked. Even maternal stress has been identified as a factor.

OK, enough on autism causes. I think you can see that the wave of increasing autism prevalence can only be addressed by a combined approach, which looks at genetic, environmental, and epigenetic factors on a multi-generational basis. We still have a long way to go to get a full understanding.

Breadth of the Autism Spectrum

Not surprisingly, considering the various root causes of autism, the spectrum is very broad. Many autistics have co-morbid conditions such as epilepsy, dyspraxia, and intellectual disabilities, but even without considering co-morbids, there are wide variations in the severity of autistic traits.

This doesn’t mean that autism is on a continuum with the neurotypical brain or that “we’re all a little bit autistic”. There are commonalities in the way in which a developing brain adjusts to compensate for neurological issues. Hence, everyone diagnosed with autism, at whatever level, will have traits within the common domains: deficits in social communication and interaction; and restricted, repetitive patterns of behaviour, interests or activities. We’re just affected to different degrees, depending on the type and severity of the underlying neurological problem and the way in which our individual brain adapts.

Autism Cures and Treatments

There is much disagreement over whether or not an autism cure, if such a thing could be developed, would be desirable. To me that’s a moot point, because how can we develop a holistic cure for a condition which is not a single disorder? It’s not going to happen.

The way I think of it is this: if autism is not a single neurological disorder but a compensatory developmental trajectory, what does that tell us? We can think of autism as the brain’s attempt to build alternate pathways to work around a neurological issue. This alternative wiring is obviously important in maintaining the autistic person’s cognition. Any attempt to alter or remove autistic cognitive pathways is likely to have a negative effect on that person, unless the root cause of the autism – the underlying neurological issue – can also be resolved. Without understanding this, attempts to cure a person’s autism can actually be perilous.

When presented with a potential autism treatment, it’s important to see where it fits within the equation:

Various neurological problems –> developmental differences –> common pattern of behavioural issues = autism

For any treatment to be a genuine cure, it must address the root cause, that is, the neurological problem. This means that, while we might be able to prevent or treat certain subsets of autism with a common root cause, there can never be a single, definitive cure.

The most common treatments for children, such as ABA therapy, are aimed at lessening autistic behaviours. They target the third and last part of the equation. The obvious problem to this approach is that it neglects consideration of the reason why those behaviours have emerged.

Many of these therapies are somewhat successful, in that an autistic child may learn to modify their behaviours to become less disruptive. While this may seem completely positive to their teachers and carers, there can be a negative impact on the child themselves. Developmental differences are still present, internally, they just become less obvious on the outside.

Imagine, every moment of every day, feeling the itch of a hundred mosquito bites and being told that scratching them is absolutely not acceptable. How exhausting would it be to constantly fight that impulse? So the autistic child is having to actively and constantly work against their own natural impulses in order to keep autistic behaviours in check.

Don’t get me wrong, I’m not against helping autistic children to find work-arounds and alternatives to disruptive behaviours. It is possible to mould young brains to some extent, and the better an autistic can fit into society, the more opportunities and choices they are likely to have in life. In fact, researchers have identified a subset of autistic children who have an “optimal outcome” and actually lose their autism diagnosis.

Has their autism been cured, though? Of course not. The reason they’ve lost the diagnosis is that the diagnostic criteria are based on external observation of autistic behaviours. Such behaviours may be trained out of a person, but will they still experience difficulties due to their autism? Of course they will. The difficulties are likely to become internalised into mental and physical health problems instead, so you no longer see them.

What I’m saying is that we need to be careful when implementing any behavioural treatments to be sure we are always working for the benefit of the autistic person and not solely to extinguish “abnormal” behaviours, at any cost. Which brings me to:

The Autism Schism.

In recent decades, disability advocates have been moving away from the “medical model of disability ” and towards the “social model”. That is, not just seeing disability as a problem within a person which needs to be fixed, as far as medically possible, to allow them to function normally. The “social model of disability” takes the view that society itself needs to adjust and accommodate people with disabilities, so that they can be afforded the the same rights and opportunities as everyone else. That means accepting autistics fully into society, “abnormal” behaviours and all.

Another concept adopted by autistic advocates is that of “neurodiversity”. This is the notion that autism (and other neurological differences such as ADHD) should be recognised as being a part of the natural variety of human brains. The implication is that autism ought not be considered a disorder at all, but a different way of seeing the world which is equally valid.

My understanding of the schism which divides the autism community is this. On the one hand, there are people like myself, the “Level 1” or “Asperger-type” autistics. We have some ability to communicate our difficulties and maybe even advocate for awareness and support. Our aims may be to improve our employment prospects and mental health support, for example. We might use the social model of disability to argue for adjustments at work, and we might adopt the concept of neurodiversity by stressing that autistic brains are different, but not less than, the neurotypical. We may feel that with acceptance of our difficulties and small adjustments by others, we can demonstrate our value to society.

The parent of the severely autistic, intellectually disabled or non-verbal child may see things differently. There may be little comfort for them in the social model of disability because the fact is, there will be many things their child will not be able to achieve due to the severity of their autism. There are limits on how far their difficulties can be offset by societal adjustments.

The neurodiversity concept may also be problematic. It casts a positive light on autism only as far as it is caused by the natural shuffling of genes within the human gene pool. Certainly that may apply to polygenic autism, but when it comes to de-novo mutations or autism triggered by toxic effects, the concept is on shaky ground, and may be unhelpful. It alienates those whose experience of autism is overwhelmingly negative.

In Conclusion

What I’ve tried to illuminate in this post is the heterogeneity of the autistic population, which obstructs us from reaching a common concensus on our needs and advocacy goals. If nothing else, I hope readers will understand to avoid blanket statements with respect to autism causes and treatments.

One person may consider their autism a blessing, another a curse. One may strive for acceptance, another for a cure. Depending on their situations, both views may be equally valid and appropriate.

I think perhaps we’ve missed a step on the road to autism acceptance. To fight a battle an army must be united. If we could recognise and heal the internal divisions within the autism community, maybe we could finally advocate for our multiple and varied needs with one, powerful voice.

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