The Benefit of Defining Severity in Autism

We have seen in this blog that many hundreds of different dysfunctions can lead to symptoms broadly diagnosed as autism.  At the same time, the boundary at which people seek to medicalize behavioral problems continues to shift (more ADHD, more autism etc.), making it now hard to know what people mean by “autism”.

Rather than grading autism severity 1, 2 or 3, which is the new clinical practice under the American psychiatrists’ DSM5, my scheme might be more useful, since it would also show the variability of the symptoms.

I would rate “autism” on a scale of 1 to 100, but would state typical and peak values.  This could be established via an intelligent questionnaire given to parents and teachers.  It certainly would remain subjective and be far from perfect.

0 to 100 scale, with typical to peak

Some examples:-

Asperger’s plus Sensory

Somebody with what used to be called Asperger’s, who attends mainstream school, but has now developed sensory issues that the parents and child find troubling might be 5/15.

This would mean that most of the time the child is at 5, but when the problems arise from sensory issues he moves up to a 15.  The increase of 10 is a shock to the parents and would be noticed in mainstream school, but to someone at the other end of the scale, it would be like a hiccup.

Boy on the Bus

The nonverbal teenager with “autism” in the US, who the school bus driver forgot on the bus and was found dead a few hours later, still on the bus, parked back at the depot, might be 85/90.  This person needed assistance to wash, toilet and dress himself.  Clearly his issues were quite different from the 5/15 child.

85/90 should mean never be left alone and do not hand over to the “care” of the unknown relief bus driver.

Classic Autism at Special School

In most countries children with Classic Autism are in special schools.  What is interesting is that in this group there are often big variations over time.  These variations, just like all those comorbidities, are big signposts as to what the underlying neurological dysfunctions are.

A child might be 40/70; meaning that much of the time (i.e. at 40) things are nicely under control, but sometimes things get much worse.  Some parents describe this as “my child raves like a lunatic”, for others it might be aggression towards others and in some it might be self injury.

By far the most read posts on this blog come from people searching on google “autism + histamine”, so it looks likely that very many people find that summertime allergies cause big spikes in autism, as odd as that may sound.

There appear to be many other reasons for this temporary change 40/70 or 70/90 or even 10/30.  These big changes can be caused by all kinds of things.

In a future post I will look at the inflammatory response to GAS (Group A Streptococcus) and aberrant immunological reactions to GAS antigens.  The first of these might well cause the “raving loony” effect, while the second might the produce the facial grimacing and tics, observed by some readers of this blog.  If there was an effective rating scale, you could easily distinguish between the two.  Is the change 40/45 or 40/70 for example?

Double tap autism

In an earlier post I gave the term “double tap” autism to those people who started out with regular classic autism, say 40, who then suffer a sharp (permanent, if not treated) regression taking them to say 70 or even higher.

The internet is full of untreated examples of just this phenomenon.

Knowing that this person is 40/70, might then prompt the clinician to look for what had happened to cause this step change in autism symptoms.  If you managed to get to 4 years old before the regression to 70 occurred, there should be a good chance of finding out what happened, treating it and getting back to at least 40.

      

Autism Secondary to Mitochondrial Disease (AMD)

This young child might appear as 0/50, showing that before the onset of mitochondrial disease he was a typical child, but he regressed over a few weeks/months to something similar to classic autism.  It is the big change from 0 to 50 that should sound alarm bells.

The sooner it is treated, the better the final result. 

Primary and Secondary Causes of Autism

This all fits nicely with the segmentation I suggested in a previous post, regarding Primary and Secondary causes of autism.

If someone is 40/70, the 40 represents the primary cause(s) of their autism and the increase by 30 to 70 is the effect of the secondary dysfunctions when they are active.

Note that many people have commented that their therapy for Primary autism ceases to be effective when the secondary dysfunction(s) become active.  Hence “NAC has stopped working”, “Bumetanide has stopped working” etc.

Primary Dysfunctions in Autism	Secondary (some transient) Dysfunctions
Excitatory/Inhibitory GABA imbalance	Food allergy (e.g. gluten)
Oxidative stress	Pollen allergy
Neuroinflammation	Mast cell activation disorder
Activated microglia (over-activated immune system) inviting secondary dysfunctions	Mastocytosis
Vitamin B7 (biotin) related dysfunctions	Reaction to GAS and/or GAS antigens
Vitamin B9 (folate) related dysfunctions	Reaction to candida
Vitamin B12 related dysfunctions	Mitochondrial dysfunction
Central hormonal dysfunction (T3, TRH, Serotonin, IGF-1, BDNF etc)	Inflammatory events raising IL6 (e.g. slowly losing milk teeth)
Ion channel dysfunctions	Disturbed gut microbiota
Mitochondrial disease	Leaky Blood Brain Barrier (BBB) & leaky gut
etc …	etc…

The thing to remember is that while the some of the above may be relevant to most people exhibiting “autism”, many will be irrelevant to any one person.  So in many people candida, gluten and disturbed gut microbiota are not an issue at all, but in a small number one may be.

I think that some mild cases nowadays defined as autism are likely caused by just one of the secondary dysfunctions that may, on occasion, fade by themselves, or by dietary modification.

Resource Allocation

Since there will never be enough resources to go around, authorities have to prioritize where money is spent.  Do you start with the worse affected and then work down?  Do you invest the limited resources where the impact is greatest?

One thing we know for sure is that there will never be enough money and often those who complain the most, get the most resources.  Those without lawyers and parents who can write long letters get what is left.

If there was a severity scale, it could be used to better allocate resources and also to differentiate between those affected.

For example, you could say people rated > 30 should receive some ongoing financial support, or people < 10 do not need publicly funded services, or people > 50 need constant supervision, or people >70 cannot travel on the school bus without an assistant.  It is not rocket science.

Employment

You regularly hear about some big software company or another wanting to hire people with autism.  This further adds to the confusion of what autism is.  What they really mean is that they want people with a high IQ and autism 5/7.  So they have Asperger’s and have the occasional off-day, but nothing severe.  They are not going to throw the coffee jug at someone, or pee in the elevator.

The car wash where they hire people with “autism” is talking about the 30/40 type where everyone is glad that person is getting out of the house to work and in a loosely supervised environment, the odd behavioral “event” is acceptable.

Travel on Planes

You do hear horror stories about people with autism having tantrums on planes.  You could have a rule saying that people with autism peaking at 50 should have to notify the airline in advance, and then the pilot and crew are forewarned.  The airline can then make, and publish, its own policy of whether to accept such passengers.

Small children going berserk on a plane can be dealt with, but fully grown “children” may not be so easily controlled by their, then older, parents.

Conclusion

The better you can define a problem, the closer you are to a solution.  If other people use the same definition the easier it is to identify shared solutions.

Given the complex nature of autism and the huge numbers of people affected, it should be possible to do much better, so that similar clusters can be identified and people can then be more accurately treated.  As it stands today what might help 5% of people is tried on 100% and then, after a few failures, people give up.  We need to know more about those 5%; that applies to all the therapies that do seem to help some people. 

No fancy genetic testing is required to grade severity of autism and it is the most obvious place to start.

Change in severity of autism can really tell you a lot.

As usual, I should add, I do not expect any of this to happen.