Autism – Awareness and Acceptance

 

There is a lot of talk this month about autism awareness and acceptance.  Some people get very excited about this and some people get quite upset about it; it seems to depend on how old the person with autism is and how severely impaired, if at all, they are. 

For much of the confusion we have to thank the psychiatrists who keep broadening the definition of autism and their lack of using one of the standard ratings scales to tell people just how autistic they actually are (like on a scale of 1 to 100, not 1 to 3).  The result is a widespread misunderstanding of what the word autism means.  Nowadays it means very little.

I think that bubbles better represent autism than pieces of a puzzle.

People with any difference, from mild to severe, tend to live in their own little bubble; but bubbles do have a nasty habit of bursting and then a different reality may present itself. Also, if you live in a bubble you generally only hear people with similar opinions to your own – the social media echo chamber effect.

Monty, aged nearly 18, continues to live happily in his enchanted bubble. School is online currently, but hopefully back to normal again next week. Online school is pretty good because his assistant comes to our house.  Easter was celebrated and a couple of girls from his class came to hunt for chocolate eggs with him in our garden.

We visited some of Monty’s distant relatives who are usually looking after their grandson with severe non-verbal autism.  The boy has been out of school for a year, because his special school closed due to Covid.  He lives in a very different kind of bubble. Grandad was wondering where the boy will be in 10 years’ time, presuming it likely to be in an institution, a very different kind of bubble and not an attractive one.

On Sunday we were invited by friends for lunch beside the river. Their adult children do not come, likewise our adult son, they all have better things to do.  Monty was invited and we are beyond the stage where you would leave him at home, out of sight, with a babysitter. Our friends are aware that Monty has autism and they “accept it”, or else they would not invite him.

It is easy to accept a young man who sits nicely for two hours, eats his soup and then devours his fish, carefully avoiding the bones and a little later, asks what is for dessert.  He makes his own way to the restroom, we are not worried he will go the women’s rather than the men’s by mistake, or that he will run out of the building, or jump into the river. So, what is there not to accept?

Can you bring a non-verbal 11-year-old boy, with severe untreated autism and a very limited diet, to a two hour lunch in a busy restaurant, surrounded by people he does not know?  I don’t think so, it would not be accepted.

Even when Monty had quite challenging behaviors, when much younger, he did get taken everywhere.  Fortunately, small children can get away with a lot - we are programmed to be sympathetic and make allowances for them.  When children become more adult-like, we expect different behavior.  If your development plateaus at the level of a 2-year-old, strangers are going to want to keep their distance when you get bigger.

Rather than blame the strangers for their lack of tolerance, why not do more to ensure development does not stall at such an early age?  How about some awareness of that?

I keep asking why special schools where we live do not teach any alternative method of communication to non-verbal autistic children.  Schools for the deaf do teach sign language, but with a diagnosis of autism you are left with nothing.  No use is made of augmentative communication devices.  No use is made of the Picture Exchange Communication System (PECS).

Clearly awareness can be a first step towards acceptance, but there are limits to what people can accept.

My elder son told me about a boy in his circle who is very obviously gay and yet his father remains unaware, even his wife has not broken the news to him.  The news would not be well accepted, so it is just hidden away.

Now that most autism diagnosed is very mild, it is beginning to get drawn into the trending gender dysphoria topic.  Being autistic is being equated to being gay and just another difference to celebrate with rainbow colours.  It is put forward as something you can choose to mask, with your built-in cloaking device, if you want, but then you risk damaging your “mental health”.

Not surprisingly some parents of children with severe autism want a new descriptive word for their child’s condition. Autism has lost any clear meaning.  I guess they would love to buy one of those cloaking devices to mask their child’s autism, then they too could go for lunch at a fancy restaurant.

Among the least accepting adults I have met were parents at a musical performance put on by children with autism.  The parents made no allowances for interruptions made by younger siblings in the audience, it was a case of “remove your screaming child!”.  I assumed they would be more sympathetic than regular parents, but not at all.

The next question is whether acceptance is enough. At a recent parent teacher meeting at Monty's school, one new teacher was telling me how he identified with our situation, because his young niece has autism and some physical disability. He thought acceptance was the key issue at school and told me how well Monty is accepted by his class.  I did not disagree, but in my mind I was thinking "well actually, how about some learning?".  One advantage that Monty has developed since taking his PolyPill therapy, is that he has learnt many new skills that help to make him accepted.  He skis well, swims well, plays the piano well and is better at mathematics than many of his peers, so they know he is more than just a token autistic.  I think he earned some respect.  On the inclusion - delusion scale regarding mainstream schooling he is doing well.

 

What to do?

In some people’s bubbles, they are already doing a lot to improve their situation. These are the bubbles to be made aware of.

People tend to want to peer inside other people’s bubbles but then step back.  The author of a book on ECT (electro-convulsive therapy) to successfully treat her son’s severe self-injurious behavior (SIB), is bemused as to why other parents do not follow her example.  I told her that for most people ECT would be a step too far.

You would think there should be a basic standard of care available to all.  If the parents do not have a grip on the situation, at least the school should and ideally so should the pediatrician.  This probably does exist somewhere, perhaps in Scandinavia.

Acceptance has different aspects, of course it is good that people can accept others with differences and include them.  If parents just accept that their child is severely disabled by autism and then assume that nothing can be done, that would be really bad. Who ever did well by giving up?

As usual a lot of harm can be done with the best of intentions.  At both ends of the spectrum there are very one-sided views.  From the very severe end come the “horror stories” of their daily life and the conviction that there is an explosion in the incidence of their very severe autism.  At the ever-booming, slightly affected end of the spectrum is a small vocal group who are anti anything that can treat autism, whether it is behavioral therapy or pharmaceuticals. 

You might wonder what happens to all those neurodivergent people with Schizophrenia or Bipolar – don’t they get celebrated?  I do not see anyone lobbying for awareness and acceptance of them.  Why is that?  Too scary perhaps.

In many parts of the world the child with untreated severe autism is going to end up living in the same place as the adult diagnosed with Schizophrenia. Autism comes home to its big brothers Schizophrenia and indeed Bipolar, with all their overlapping miss-expressed genes.

Choose your bubble wisely.

 

What should be done?

The psychiatrists paid to write the diagnostic manuals (DSM5) need to step into the 21^st century and start doing the job properly.

An observation of autistic behaviors in a patient needs to be evaluated and graded, for example with the Childhood Autism Rating Scale (CARS).  If the child is below the threshold of 30, they should not be diagnosed with autism.  Yes, that means that the school does not get extra payments and indeed neither do the parents – this often is the desire behind a diagnosis.

The people who actually have an autism score above the threshold should be the focus of the autism budget.  The bigger their challenges, the more support they should get.

One in five school children have special education needs of one sort or another and these clearly should be addressed, but not by misdiagnosing some of them with autism.

People who have a genuine autism diagnosis, should then start a process of determining what are its biological foundations and what can be done to reduce the damaging consequences that led to seeking a medical diagnosis in the first place.

If there are no damaging consequences, how can this be a case worthy of a medical diagnosis?  It isn’t autism, perhaps it is sub-clinical autism.  It is likely quirky, nerdy, introvert, anxious or even gay (ouch!) etc - all perfectly normal traits.

 

What will be done?

Nothing.

Choose your bubble on that basis and make it as enchanted as you can.