AUTISM - 10 MADDENING TRAITS OF BEHAVIOUR

 

I am going to attempt to explain Pathological Demand Avoidance (PDA), as discussed by two eminent doctors in the field of autism.  They have clarified for us several traits of behaviour we have come to recognise and this is extremely helpful and makes up for our frustration in many ways, knowing this is common with autistic people and those with hypermobility Ehlers Danlos syndrome

Bear with me while I set the scene with an illustration of the life of the chronically ill who have PDA, and the effect this can have on the carers looking after them seven days a week, 356 days year  - with only shopping and essential appointments to break the stultifying routine.

This can involve as many as three specific tasks an hour some days. TV breaks are constantly interrupted – thank goodness for the pause button. A recorded feature film can take several days to get through. Meals? You can be up and down and even when you are not you fear you might be and so remain poised between mouthfuls.

Friends may know your situation and yet they don’t really get it, being hard wired to think of illness as a two-week inconvenience. When in fact some illnesses are life-long and life changing.

Spike Milligan, the father of British comedy, famous for writing the Goon Show for radio – he often left me helpless with laughter - was also a manic depressive. He once wrote that “life was an illness for which the only cure was death”. He trod a thin line between brilliance and insanity.

As for carers, the sheer frustration and anger and  guilt that comes with complaining about how life has turned out was revealed by a comment on a Facebook forum offering support for those in the same boat.

This was a woman caring for her housebound husband, whose poor health makes many demands on her throughout every day.  When friends told her

what a lovely holiday they had she reacted angrily: “Thanks a lot for reminding me how shit my life is.”

To make matters worse, friends tell her she cannot put up with that. “You must have a break; get away for a few days…...”

This is a mirror-image of what have to deal with, and extends to hearing in great detail about family occasions our isolation prevents us from taking part in.

It is all well meaning but unhelpful and serves only to show how misunderstood long term health issues of loved ones often are, for the sick person and their family under immense stress.

It is made more especially sensitive when we are grateful to the same close relatives for their support, chauffeuring us to appointments, spending a lot time on DIY about the house.

In our case, our daughter’s condition would be complex enough without the added weight of autism – she has Ehlers Danlos Syndrome which results in weak connective tissue and Postural Orthostatic Tachycardia -  the slightest movement sends her heart rate soaring and her blood pressure to plummet.

She ticks all the autism boxes and now suffers with PDA.

These various conditions have left her in a poor mental state with severe sensory issues – everything is too loud, too bright. She has cut herself off from friends, the radio, television, and social media. Doesn’t read.

Spends most of the day lying down in bed.

But now and again she will laugh or chuckle when we are attending to her, she will sometimes smile. Which makes it all the more of a mystery as to why, how, she can bear to remain in that one room for years. It’s simple, movement is too painful. And the world outside too demanding.

We know of others like this.

Outside help in the form of social welfare can help with personal care, but this interaction with strangers only raises the anxiety still further and can be counterproductive so it can only happen once in a blue moon.

Autistic people we learn are very clever because of their “neurodivergent” brains - as distinct from the rest of us - the “neurotypical”. Autism has driven the Silicon Valley revolution!

The downside is autistic people are unable to comprehend social behaviours considered typical by the rest of the world.  So they may shy away from group activities because they can’t figure it out.

Autistic people are wired differently.

In trying to fit in, they will mask their feelings in an attempt to act “normal”, which puts them under even greater mental stress.

And with this comes greater anxiety which is off the scale.

Enter stage right, Pathological Demand Avoidance, or Extreme Demand Avoidance.

This means to avoid doing anything for yourself, or to do as little as possible. And to get others to do things for you. The aim being to remain in control, which they plainly cannot do in the neurotypical world.

Professor Tony Attwood and Dr. Michelle Garnett revealed 10 examples of this behaviour typical of autism.

 Professor Attwood is considered to be one of the world’s foremost experts on Autism Spectrum Disorder. Dr. Garnett is a clinical psychologist who has specialized in autism for nearly three decades.

Here at 10 examples of extreme behaviour typical of autism.

·         I am good at getting around others and making them do as I want

·         I seek to quibble and change rules set by others

·         I have a very rapidly changing mood

·         I am driven by the need to be in charge

·         I blame or target a particular person/persons

·         I have difficulty complying with demands and requests from others unless they are carefully presented

·         I obsessively resist and avoid ordinary demands and requests

·         I ensure any social interaction is on my own terms

·         I know what to do or say to upset particular people

·         I am unaware or indifferent to the differences between myself and figures of authority

 

People with EDS, it has been found, are prone to having PDA.

Not that the NHS cares.

Most doctors remain ignorant of it. And some, flying in the face of scientific research, even dispute it.

The NHS will not engage with this. 

In response to a petition, the  government says it has "no plans for a national service for diagnostic treatment forl hEDS (hypermobility Ehlers Danlos syndrome) or HDS (Hypermobility Spectrum Disorders).

I very much doubt anyone with these conditions  clapped for the NHS during the pandemic.

If you are fat or smoke, that’s a different story.

The NHS spends between £4bn and £6bn on helping the obese and almost £5bn on smoking related illnesses.