opening door

Hello longman thank you for that information what do you do with your time

Unfortunately nobody knows.... Most research on autism is about finding a cure or supporting people in childhood and adolescence. As recent figures have shown upwards of 95% of funding on research goes on finding a cure (well more chance of getting a Chair or a Nobel Prize - lifestyles research is for wimps).

NAS has a campaign "Getting on? Growing older with autism" under living with autism - adults with autism and asperger's syndrome - autism and ageing. But it doesn't have much in the way of answers. It just seems to be a knee-jerk response to realising autism continues after transition to adulthood.

The original diagnosed children are now in or approaching middle age, but while some adults have been diagnosed, as all can testify there isn't much support around, so how can anyone use adult diagnoses to study autism and ageing?

Added to that you have to look at the outcomes for many adults with autism - secondary complications like depression and schizophrenia, alcoholism (a scary number) and drug addiction, homeless including in hostels and on the streets, in prison or otherwise in trouble with the police. Any of us with a job find ourselves brushed off by GPs and other health professionals as delusional and immature, and those without a job are treated as benefits scroungers. So where on earth they are going to collect data on growing older with autism beats me...

I blame parents groups (and NAS originates from parents groups) which are more about the trials and sufferings of parents bringing up children and adults on the spectrum. Go to a parents group meeting anywhere in the UK and in the unlikely event of seeing an adult on the spectrum, he/she will be with the parents - there's nothing provided for adults on the spectrum in their own right. Its the parents that matter.

So all I can say is if you've survived intact to 51 its a miracle in itself. Many people on the spectrum experience minor motor control based stalling/hesitancy, and the chances are that's all you've got. Known cases of catatonia with autism have been young.

The fact is though we don't know how autism affects dementia - will the dementia drugs respond adversely with autism? At 64 I'm nearer finding out than you, but I've already almost died twice in my late 50s from entirely different medical problems, so my philosophy is largely see how it goes.

My main concern is as a loner with social difficulties I don't know what happens when I can no longer support myself - living in a communal environment like a care home would be hell on earth.

Hello longman thank you for that m8. I am 51 years old its all new to me do you no how bad can it get???

It seems quite common in autistic spectrum that there are occasional gaps between concept and action, however if it is getting more noticeable, and happening more often, you need to check it out with a professional (if you can find one).

You don't say how old you are, as this seems to be a characteristic of ageing. Catatonia is often diagnosed in association with autism, which is a slowing down and interruption of motor responses. It is characterised by increasing tendencies to get stuck at the initiation of a physical movement. In extreme cases it may make it difficult to feed yourself (lift food out of bowl, lift to mouth, insert in mouth, eat - becomes tortuously staged and slow).

There seems insufficient knowledge about autism and ageing. Lets face it we haven't managed to sort out transition from adolescence to adulthood, and adult autism isn't being taken seriously enough, let alone old age.  If it is at all reassuring I'm caught by the shower situation, and have a pause before I actually get in.

However that's an extreme. It seems to be present on a small scale with many people on the spectrum, more likely related to motor control (clumsiness) where there's just a hesitance over putting an intention into action, and doors figure a lot in this, so if it is just doors and showers, its probably nothing to worry about.

The other door issue, for many people on the spectrum, is the door handle, or which way to pull or push a door open. Autism seems to limit perception of the action to what appears most obvious. Most door handles turn down, or rotate clockwise to open, but if they work in reverse, many people with autism find they cannot identify the need to try the opposite direction. They just keep trying the expected way.

For some reason NTs seem more readily able to experiment. It may be due to fear of change on spectrum. Likewise it is logical for a door to open inwards, if it opens outwards people on the spectrum often get stuck.

If it is a new experience, and happening more often, and causing more difficulties, get it checked out.